what is this? Update - post 107/Completely Healed!

[breezy1077]

Does this sound familiar to anyone?

My DH-40 has for the past year now been having myoclonic seizures. It started as a twitch in his hand but is now pretty violent and affects his upper torso. He also has been starting to have his arms go numb from the elbows down mainly affecting his left side. He also gets sharp burning sensation in back of head that spreads from right to left and can make him dizzy. Also, not sure if related, but his right leg increasingly goes out on him causing him to stumble (and he's even fallen flat forward a couple times).

Here's what we know: when he was during his twitching faze he had a mri of head and nothing showed. he does not have epilepsy. the myoclonic seizures do not happen at night and he has had no recent truama to head and no trauma to knee.

Doctors are just saying they don't know anything and he's getting worse(been to family doctor and Cleveland clinic)

Thoughts anyone?:confused3

[Mackey Mouse]

I do not have any clue what this is.....sorry, and not sure about where DH has been going but if I was not getting answers from my own doctor and from the Cleveland Clinic, I know nothing about this clinic, I would be going to a specialist.. neurological maybe at a diagnostic hospital, not sure what is in your area....

[breezy1077]

The Cleveland Clinic is on the same lines as the Mayo Clinic and Johns Hopkins. I think we just got a bad neurologist, but my husband is so frustrated that they haven't found anything even after all sorts of testing that he doesn't want to go back there. We're also not exactly sure what all they've ruled out so far. We asked for a list of what they tested for and all we got was his blood work back and it's presented in a way that tells us nothing. Just frustrated and worried so if anyone has had similar symptoms, I'd love to hear from you. Thanks:)

[annrae]

Does this sound familiar to anyone?

My DH-40 has for the past year now been having myoclonic seizures. It started as a twitch in his hand but is now pretty violent and affects his upper torso. He also has been starting to have his arms go numb from the elbows down mainly affecting his left side. He also gets sharp burning sensation in back of head that spreads from right to left and can make him dizzy. Also, not sure if related, but his right leg increasingly goes out on him causing him to stumble (and he's even fallen flat forward a couple times).

Here's what we know: when he was during his twitching faze he had a mri of head and nothing showed. he does not have epilepsy. the myoclonic seizures do not happen at night and he has had no recent truama to head and no trauma to knee.

Doctors are just saying they don't know anything and he's getting worse(been to family doctor and Cleveland clinic)

Thoughts anyone?:confused3

Cleveland Clinic has a very good reputation and I know the hospitals in Boston are also very good. One thing you might try is going online and going to Nord.org to see if they have any information pertaining to your DH's symptoms. They deal mostly with rare and "orphan diseases" and can give you some info - just be careful - because too much info sometimes can be scary and not have anything to do with your DH's symptoms. Just a idea! Good Luck and hang in there. As Mackey Mouse suggested, a good Neurologist is needed at this time.

[Mackey Mouse]

I am glad to hear that Cleveland Clinic is up there with the Mayo Clinic.....I am sorry I did not know that, but we all seem to know the ones in our area that are the good ones..

Now.. if you asked for specifics and they sent you bloodwork that you would have to go to Medical School to interpret to me means time for a new doctor. I would ask for a referral to a specialist and I would not stop till I got answers.

The weird thing is my husband knew something was wrong with him years ago, but no one could find anything... He had the symptoms, they just were not thinking in that area.. Now I am not saying what your DH has is anything like what mine does....but I would be aggressive and get answers and not stop till I did. I think back if maybe we had been a bit more aggressive when DH was having symptoms, and we were getting no answers....who knows where we would be right now..

I agree with Annrae, look up the symptoms on that site she gave you and maybe they will have more answers for you. I am stumped and I am usually very good at this.

[breezy1077]

Thank you! I think you're right a "good" neurologist is what he needs. You'd think a place like the Cleveland Clinic would actually be excited to get a case that has them stumped. I will try the website you suggested. All the other ones are confusing - I've researched almost all the typical diseases that involve Myoclonic seizures and he doesn't seem to fit neatly into any specific one. Mackey Mouse, I think you're right, instead of giving up I think we need to "push" to get answers. I think he sense that something serious is wrong. He keeps "joking" about "when he goes...". It also frustrates me that people suggest it's just stress. Yes, we're in a high stress industry, but we've been doing it for 15 Years now.

[Mackey Mouse]

HUgs to you.. you go girl and get those answers..

My DH was in a high stress industry for 36 years........the stock market, and if I thought for a minute that was the cause of this cancer, well I think I would hire a good lawyer. I wonder how that would hold up in a court of law, he got cancer because he had a very high stress job for 36 years, you would see how quick stress would not be used as an excuse for undiagnosed illness anymore. To blame stress to me is like using the term "viral"
when someone is ill.....it means they do not know.

We know our bodies and we know when something is wrong, they just have not found what is causing this for your DH. Hugs again and keep plugging.

[breezy1077]

Here's a symptom I forgot about just in case it helps someone who might read this: When he kneels down and stands up he gets extremely dizzy and has to wait a minute or two b4 he can walk.

Thanks for the feedback, sounds like you need hugs too, Mackey Mouse:hug:

[SusieStone]

What did his EEG show?

How about a EMG or nerve conduction sutdy? Certainly a baseline now would prove beneficial in the future for comparision.

There are a full battery of blood test and diagnostic testing that could be obtained to pinpoint what is going on.

Tere are good and bad in whatever facility you go to...it is up to the individual to search people out.

Is the doctor fellowship trained and board certified in the area of practice?

That is one of the first things I always look at.

Just a couple of thoughts.

[Mackey Mouse]

Thanks for the hugs.. I think I am a bit cranky lately. I feel we go two steps forward, three steps back, and truly they do not know with what my DH has... he is writing his own protocol or as the doctor says we are in unchartered territory.. We will take it, but sometimes it does make you a bit over the edge..

I want some answers for you and your DH, I just wish I had them for you.

[breezy1077]

Ok. My husband is pretty set on not going for more tests. He says he wants to wait for a month or two and talk about going then. How do I convince him to go?

By the way a new symptom has popped up over the last week or so. He chokes sometimes because he says -its the weirdest thing - he feels like he's choking on his own saliva. He says it's like he can't swallow right. Like he can't control which pipe the saliva goes down. This thing is so strange:confused3

[dee47]

Umm...pray it's not, but a lot of his symptoms (not all, but...), esp. his latest, are adding up to ALS (Lou Gehrig disease). Of course, they can equally be the symptoms of other neurological disorders...but if he has trouble swollowing, tell him he needs to get checked now or he may actually choke. Maybe that will convince him? And he needs nerve conduction tests, as another poster pointed out.

[Mackey Mouse]

Not saying it is or it isn't but the previous poster struck a nerve with me too... he needs more testing with all these symptoms...everyday life does not include these symptoms if you are healthy... you have to push him for your sake, himself, and the family...

Hugs..

[breezy1077]

A big thank you to everyone. I really pushed him today (ALS scared the pants off me):eek: . He called and tried again to get his results and test information from the Cleveland Clinic. He specifically asked again (for about the 5th time) to get a list of all the tests they've done and what they were able to rule out. The only thing they have ruled out as far as we know is epilepsy. I also stood over him while he called the internist(sp?), who originally ordered the MRI of his brain, to try to get another appt or at least a referral to another neurologist. He was on vacation til mon. and the scheduling nurse tried to tell him he's booked for 2 wks.. I wouldn't let him get off the phone until he spoke to someone who agreed to have the doctor call him mon. when he returns. I do know he has not had the nerve test or an EMG. One more symptom that may be unrelated - he has been complaining about being short of breath for the last month or so. He has chalked it up to being out of shape, but he has never been in great shape so.... I'll let everyone know how things turn out. One thing though...both the neurologist and the internal med. dr. dismissed the head pain, stumble/falling, and numbness in arm as being unrelated to whatever neurological condition is causing the myoclonus. why? It seems pretty obvious that all these things popping up at the same time would be related, right?:confused3

[breezy1077]

Miracle (not the kind you think:) ) my DH just heard from his neurologist and he was finally able to determine what they've tested him for.

Basically all they tested him for were cancers:confused3 . When he explained the new symptoms he was having the neurologist only said that he would refer him to a movement disorder doctor?!?

Movement disorder - really? Can someone explain that to me like I'm a 4 yr old?

When my DH went to this neurologist in August all that was really happening was twitching in his hand and arm. Since then all the other symptoms have occurred and his seizures are so violent they throw him backwards.

Just venting at this point;)

[dee47]

A movement disorder is a neurological disorder that causes involuntary movements, tics, and inability to control muscles that can lead to difficulty eating, speaking, walking, swallowing, etc. They range from annoying to fatal. Parkinson is a well-known example of a movement disorder, myoclonus is also classified as one. The most dreaded one (in my book at least) is Huntington chorea. Tourette syndrome is another example.

A movement disorder specialist could actually be a step in the right direction, but don't let anyone tell you in advance that some symptoms are not related to others. He needs more tests to rule out any relationships between his symptoms. Maybe the movement disorder guy will be more...um...caring? Competent? I'm not sure what word to use, but his current docs' attitudes annoys me. His symptoms are progressing far too fast and are far too severe for them to dismiss it at this point. The trouble breathing / swallowing should have set off all sorts of red alerts by now, I would think.

Is he taking any medications on a regular schedule? Has he recently started new meds? Has he been exposed to anything at work? Is he showing behavioral changes? I don't know what he does for a living, but these are questions that should have been asked already.

Hugs to you and your hubby. You are both in my thoughts. I'm really glad something is moving at last. Please let us know when there's any news!

:grouphug: :grouphug:

[breezy1077]

A movement disorder is a neurological disorder that causes involuntary movements, tics, and inability to control muscles that can lead to difficulty eating, speaking, walking, swallowing, etc. They range from annoying to fatal. Parkinson is a well-known example of a movement disorder, myoclonus is also classified as one. The most dreaded one (in my book at least) is Huntington chorea. Tourette syndrome is another example.

A movement disorder specialist could actually be a step in the right direction, but don't let anyone tell you in advance that some symptoms are not related to others. He needs more tests to rule out any relationships between his symptoms. Maybe the movement disorder guy will be more...um...caring? Competent? I'm not sure what word to use, but his current docs' attitudes annoys me. His symptoms are progressing far too fast and are far too severe for them to dismiss it at this point. The trouble breathing / swallowing should have set off all sorts of red alerts by now, I would think.

Is he taking any medications on a regular schedule? Has he recently started new meds? Has he been exposed to anything at work? Is he showing behavioral changes? I don't know what he does for a living, but these are questions that should have been asked already.

Hugs to you and your hubby. You are both in my thoughts. I'm really glad something is moving at last. Please let us know when there's any news!

:grouphug: :grouphug:

Thank you so much for your feedback. That makes sense about the movement disorder now, I thought they were trying to dismiss that there is something neurological going on. He isn't on any meds - he even hesitates to take advil or tylenol. nothing new at work - he has a professional job and works in an office. Behavioral changes? That ones tough. He's never been the cheeriest of people, but he is pretty quick to anger. It seems worse, but its tough to say for sure. He did ask the other day if we ever got our DD baptised? I was a little concerned he didn't remember that. HD was our thought, but he has no record of family history. But...his dad, grandfather, and uncle all died young. I saw a family movie of his grandfather b4 he died:eek: he looked to be in his 90's and he was only 61. I'll keep everyone updated. Again, thank you all!!!:grouphug:

[breezy1077]

His doctor referred him to a specialist. He has an appt. May 1st (I even had him call back and be put on the cancellation list). I'll let ya know what happens.:)

[dee47]

Fingers crossed...Good luck!

[breezy1077]

:thanks:

[breezy1077]

We went to his new neurologist today. This guy is much better in that he did not dismiss any of DH's symptoms as unrelated. The other 2 doctors dismissed immediately the numbness in left arm and burning sensation in head. :confused3

Anyway, he kept asking if the siezures occur just at rest or all times and he asked twice if they occur while he's walking (they do). I thought that was curious. He also asked if there was any pain in the neck area between the head and the arm that's numb (there's not) . At the end of the apt. I asked if he had any inclination about what we might be dealing with and he said DH has the symptoms of many things, but with all of them together - he doesn't fit neatly into any diagnosis.

He said more testing was needed to see if we were "dealing with something benign or sinister". (DH and I had a little laugh at the wording - sinister sounds so sinister ;) )

He ordered another MRI, a sleep deprived EEG?, an EMG, and more bloodwork.

Ah well, I guess I'll update y'all when the tests come back. I just wish we could have come away today with at least a hint of what it might be. In the meantime, I'll consider no news as good news, but quite honestly - right now no news is just frustrating.

Thanks to everyone who "nudged" me into making DH go for more tests. And for all your concern and suggestions (I was relieved to hear the Dr. order a nerve conduction test after a few PP's suggested it - I never would have known what that was otherwise. It made me think maybe we finally have the right Dr. ) Thank you all!!! :goodvibes

[SeansMom]

Sending you postive thoughts. Sure sounds like the 2nd neuro. is much better than the 1st :)>

Also...a thought...does your DH drink or eat foods with Aspartame? I knew somebody who had really severe reactions similiar to what you're describing after prolonged use. Just a thought.

[breezy1077]

Sending you postive thoughts. Sure sounds like the 2nd neuro. is much better than the 1st :)>

Also...a thought...does your DH drink or eat foods with Aspartame? I knew somebody who had really severe reactions similiar to what you're describing after prolonged use. Just a thought.


He used to drink about 12 cans of diet dew - a day :eek: . He stopped drinking pop and switched to unsweetened iced tea I believe the beginning to middle of last year.

[dee47]

What a relief to hear you have the right Dr now! That's great!

Keeping my fingers crossed for good outcome. At least you know you'll have some answers soon. I know waiting seems like the worst part!


:hug: :hug: :hug:

[breezy1077]

Blood tests came back fine - nothing showing there. Although I'm having dh call back and see if they tested for Huntington's. He gets to stay up all night for his sleep deprived EEG tomorrow, and the ins. co. finally approved the MRI. Just thought I'd keep y'all posted. :)

[breezy1077]

Update: EEG came back normal. EMG is scheduled for the 28th.

BTW, what are they looking for with the EMG and can anyone tell me what DH can expect. He's a bit apprehensive about this test.

Also, if all this comes back showing us nothing - what might the next step be? His choking is getting worse and so is his shortness of breath. He made a couple trips up and down the stairs today and he had to sit down for about 5 min. because he was having a hard time catching his breath.

Could this all be due to a pinched nerve? wishful thinking I know, but is it possible?

[dee47]

You know, whatever is going on is getting worst fast. Did you let the movement disorders guy know it's getting so much worse? If it were me, I'd almost rather be admitted to the hospital for testing at this point, get it done fast and figure out where to go from there.

Did they test for HD? (They can actually do a DNA test for the gene.) What did the MRI show?

An EMG looks at electrical conduction in the muscles. It may be done at the same time as nerve conduction studies (which your DH should have as well, BTW). Abnormal results can mean anything from a pinched nerve (highly improbable given his varied symptoms, sorry!) to ALS or MD. The test involves insertion of needles into muscles but these aren't the sharp needles you think of that are used in syringes. Theoretically, they should hurt a lot less than injections. Of course, experiences vary by the individual's threshold for pain and the technician's competence. I never had one done, so I can't say for sure how uncomfortable they really are...

Do you know what blood tests they did?

I'm keeping you in my thoughts...You're all going through a really scary time, and I feel for you. I wish I had something more to offer you. At least you're with a doc who's paying attention now. :hug:

[Mackey Mouse]

Hugs. I am watching this too.. Please let us know how he is doing. I hate when the tests come out with nothing and he is still having symptoms..

Keep pushing.. until all tests are back..

[breezy1077]

You know, whatever is going on is getting worst fast. Did you let the movement disorders guy know it's getting so much worse? If it were me, I'd almost rather be admitted to the hospital for testing at this point, get it done fast and figure out where to go from there.

Did they test for HD? (They can actually do a DNA test for the gene.) What did the MRI show?

An EMG looks at electrical conduction in the muscles. It may be done at the same time as nerve conduction studies (which your DH should have as well, BTW). Abnormal results can mean anything from a pinched nerve (highly improbable given his varied symptoms, sorry!) to ALS or MD. The test involves insertion of needles into muscles but these aren't the sharp needles you think of that are used in syringes. Theoretically, they should hurt a lot less than injections. Of course, experiences vary by the individual's threshold for pain and the technician's competence. I never had one done, so I can't say for sure how uncomfortable they really are...

Do you know what blood tests they did?

I'm keeping you in my thoughts...You're all going through a really scary time, and I feel for you. I wish I had something more to offer you. At least you're with a doc who's paying attention now. :hug:

Thanks to everyone for all your advice, help, and just being there with me through this process.

They did not test for HD, I think they were just testing for cancers again. When they took his bloodwork he didn't even do a fasting, which is probably fine just mentioned to explain why I think they only tested for cancer and other levels in blood. I've been thinking HD for awhile now. Seems to fit all the symptoms, but he has no family history (that we know of). I'm going to have DH call and make sure they test for HD too. Other than ALS, HD is next on my list of what I don't want this to be. Honestly, and for those suffering from MS - this is not meant to diminish what you're going through, at this point I'm hoping for MS. Sounds funny, but I get more scared as the tests come back normal, mainly because the more sinister stuff seems to be the most elusive to dx from the research I've done.

I'll pass on to him what to expect with the EMG. Thank you.

I'll talk to him about the hospital, but I already know what his answer will be.

Thanks again to everyone - I'll keep you posted.

[breezy1077]

Forgot to answer about the MRI - Normal, but they just did one of his head - should we be looking lower - like spine area? (I've been thinking spinal tumor too, benign, but growing?)

[dee47]

Fasting for blood tests is usually only needed for glucose and cholesterol, so no fasting doesn't mean they didn't test for things other than cancer. They just didn't test for diabetes :)

I would at least ask the doc why they only did a head MRI. I'm guessing all his symptoms point more to a brain problem, but it's worth asking just to make sure they didn't skip a test for insurance reasons (it's happened before...)

HD was not always recognized for what it is in past generations. Also, some patients have HD with no family history. Not that I'm trying to spread panic, but you've obviously already thought about it. Have him tested, hopefully for peace of mind. If the test is negative, you can breathe easier. If not, there are clinical trials you can enroll in.

You know, I can totally understand when you start rating diseases on a scale of "which is the lesser evil to have." I think not knowing, and imagining worst-case scenarios, is the worst place to be in. I hope this gets resolved soon. How are your kids doing through all of this? I imagine it's tough being scared and trying to function normally as parents...You are all constantly in my thoughts. :hug: :hug: :hug:

[breezy1077]

Thanks Dee! My youngest is probably too young to realize - although she does make the grunting sound DH does when he seizes - we're all able to laugh at her mimicing my husband. DS has PDD-NOS, so I'm not sure how much he's picked up on what's happening and we don't want to sit down and tt them until we know something. I think he does pick up on the stress though because he's had some recent set-backs in behavior at school lately.
:confused3 who knows though. I think the Dr. only had the head sched., but we did run into some resistence to the MRI, the ins. co. would only approve it after talking directly to the Dr..

I just really appreciate the support. Thank you!!!

[breezy1077]

DH just told me last night that he has something new happening.

He said it feels like there's a buzzing inside his thigh on the leg that always gives out.

He said it feels like there's a cell phone inside his thigh vibrating? It's off and on and has been going on since the weekend. Does this new symptom shed any light to anyone on what this might be?

[dee47]

Can he see his muscles twitching when it's going on? This could be fasciculation (muscle twitching). It is a symptom of ALS, MS, or nothing at all, depending. It is most commonly associated with ALS, though few people know there is a syndrome called Benign Fasciculation Syndrome (BFS). It's annoying, but harmless. An EMG is one test to show if the symptom is part of BFS or something else. Make sure your DH tells his doc about this. Stress and anxiety can worsen BFS, BTW. And surely your DH is not stressed at all at the moment :rolleyes1 :rolleyes1

I'm sorry your DS is having stress-related setbacks. Kids really do pick up on stress, and sometimes bad behavior is the only way they can express their own anxiety -- my DS was almost impossible in the months before my ex and I separated. The tension at home was so bad and he just...let us know it was getting to him. In the only way he could.

PM me if you need to vent off list. I'm sending more hugs and good thoughts your way... :hug: :hug: :hug: :hug:

[breezy1077]

Thanks dee, I might take you up on that PM later. He called the Dr. today to let them know. I'll keep you posted. Again, it means so much that you're helping me right now. Thank you!!!

[Mackey Mouse]

I hope you find out what this is Breezy, the not-knowing is so difficult.. Keep us in the loop..

Thanks to all who are trying to help here.. :)

[dee47]

Keep your chin up, Breezy. We're all thinking of you and you family! :grouphug:

[disneyloveNY]

The choking is very worrisome. That symptom needs to be looked at more closely. A swallow study (video fluoroscopy) should be done. It takes about ten minutes, no pain. Simply swallowing different textured foods mixed with dye while the radiologist takes video x-rays. Choking can lead to aspiration even in small amounts which can lead to infection. I would insist on this being looked at. :grouphug:

[breezy1077]

Well, DH is going for the EMG tomorrow (wednesday). I'm going with him, so I'll make sure he mentions the leg twitches too. Does anyone know how soon the results come in? If they can't figure out what's wrong after this, I think I'll scream. I mean - what will they do next for tests? Bloodwork/neg, MRI/neg, EEG/neg.. Ugh. DH is frustrated too, and I can see that he's really sick of all the seizures.

The choking thing is on my top list of priorities for the doctor tomorrow. He's not just choking on saliva anymore. Now he chokes on food all the time. Ugh.

I'll keep y'all posted...


Ugh.

[dee47]

:hug: Breezy, if no one does or says anything definitive about the choking tomorrow you need to physically grab someone and DEMAND answers. Or else he might die of aspiration pneumonia before they take it seriously. This symptom should have set off red alerts a LONG time ago, IMHO (I think I said that before). :hug:

I can understand your frustration! Agh!

Good luck tomorrow. :hug: :hug: :hug:

[Mackey Mouse]

I hope we get some news today... this is frustrating for those of us who are trying to help Breezy.. I want to go there and grab these doctors and say you test until you find out what is going on here.. Dear God.. is it me??

Can I just say this is why people, not Breezy's husband because he does not have the symptoms, die of Pancreatic Cancer.. They do not catch it in time.. they think everything but.. and then by the time they realize what it is.. it is too late to do the surgery.. I know I equate a lot to this, but if we did not find this ourselves, my DH would not be here right now. I take each day as a blessing..

Keep pushing Breezy, you are doing a great job and we are behind you 100%.

And do let us know how today went.. please.

[breezy1077]

:hug: Breezy, if no one does or says anything definitive about the choking tomorrow you need to physically grab someone and DEMAND answers. Or else he might die of aspiration pneumonia before they take it seriously. This symptom should have set off red alerts a LONG time ago, IMHO (I think I said that before). :hug:

I can understand your frustration! Agh!

Good luck tomorrow. :hug: :hug: :hug:

Thanks dee - I will make them listen - I'm not shy that way ;) .

I hope we get some news today... this is frustrating for those of us who are trying to help Breezy.. I want to go there and grab these doctors and say you test until you find out what is going on here.. Dear God.. is it me??

Can I just say this is why people, not Breezy's husband because he does not have the symptoms, die of Pancreatic Cancer.. They do not catch it in time.. they think everything but.. and then by the time they realize what it is.. it is too late to do the surgery.. I know I equate a lot to this, but if we did not find this ourselves, my DH would not be here right now. I take each day as a blessing..

Keep pushing Breezy, you are doing a great job and we are behind you 100%.

And do let us know how today went.. please.

:hug: Thanks Mackey Mouse, you're an inspiration.:goodvibes

As always...I'll let y'all know. DH did say something last night that brought me to my knees...he said he doesn't want to go - as in die. I was floored. I mean I know that's an end-result possibility, but to hear him say it made it seem real for the first time. :worried:

[dee47]

DH did say something last night that brought me to my knees...he said he doesn't want to go - as in die. I was floored. I mean I know that's an end-result possibility, but to hear him say it made it seem real for the first time. :worried:

:hug: :hug: :hug: :hug: :hug:

You're all in my thoughts.

:hug: :hug: :hug: :hug: :hug:

[dee47]

I hope we get some news today... this is frustrating for those of us who are trying to help Breezy.. I want to go there and grab these doctors and say you test until you find out what is going on here.. Dear God.. is it me??

Nope. Not just you. I really have the same urges. It makes me mad that it's taken this long, with his symptoms getting worse fairly fast, to do tests that should have been done a year ago. AGH!

Can I just say this is why people, not Breezy's husband because he does not have the symptoms, die of Pancreatic Cancer.. They do not catch it in time.. they think everything but.. and then by the time they realize what it is.. it is too late to do the surgery..

Same story with inflammatory breast cancer. I'm doing an article right now, and the more I read (and write) about it, the angrier I get.

BTW, how many women here have ever heard of inflammatory breast cancer? This article is turning me into a crusader.

But I won't hijack this thread. I'm off my soapbox now :)

[breezy1077]

Dee, you've probably heard about this already, but there's some up and coming technology (awaiting FDA approval - don't get me started...) that involves imaging diagnostic techniques that will eventually (I hope) be used in conjunction with mammography. They can scan the breast and detect masses that can be missed by a mammogram. And, I think, the imaging technique can even tell to a high degree the probability of whether the mass is cancerous or not. Very interesting stuff...but of course it's being bogged down awaiting FDA approval. It is currently being used in many other countries though. Just an FYI I thought might interest you after reading your post. :)

[Mackey Mouse]

Dee... I had a very close friend die of inflammatory breast cancer years ago.. I am thinking how many years ago was it.. my youngest was in 6th grade and it was her friend's Mom...she is now 30.

Breezy, we are not hijacking just enlightening while we are waiting for an update from you... I will check back later..

[breezy1077]

Highjack away - I'm all for it if it helps someone!! :thumbsup2

[Mackey Mouse]

Update when you can Breezy.. we are hoping you may get some answers today.

[breezy1077]

I had the whole post done updating y'all and was about to hit the submit button, but I got interrupted ( I unknowingly broke some rules - oops - I never even got detention in school or speeding tickets as an adult, so my hearts pounding right now ;) ) and now...I'll have to type it all again, but it will probably have to be later tonight.

[breezy1077]

I'm back. It was probably good that I didn't send my other post - it was right after I'd gotten back from the Dr.s, so it was quite lengthy.

Long story short (I think), the Dr. didn't find any evidence of ALS in the EMG. He seems to think the numbness is the result of nerve damage DH has as the result of sleeping wrong? :confused3
What he still can't account for:
tremors in both hands - DH has to try a couple times to even get a fork up to his mouth
myoclonic seizures
stumbling
choking
vibration in leg

As he was saying we should wait it out for another 3 months, I was already shaking my head no. (dee and Mackey, you were an inspiration for that, if it weren't for your last few posts, I probably would have done what the Dr. recommended - a big thank you for that!) I think the Dr. wasn't used to being questioned because he looked a little irritated. I told him that I'm extremely concerned about DH's choking on food (Dr. didn't seem concerned :( ) and that he's progressed enough - we need answers now. So, he ordered the following tests:
-more blood work to detect other neurological disorders I guess - they said the blood work had to be done in stages? :confused3
-blood/dna test for Huntington's
-MRI of neck and upper spinal
-spinal tap
Dr. didn't think any of these tests would get us anywhere though-frustrating.
I think it will be interesting to see what the spinal results are - when DH first started having trouble, my first gut feeling was non-malignant spinal tumor. We'll see...So I guess my news is - no news. But at least he seems to have sort of ruled out ALS and MS.

:rotfl: I'm sorry, I have to laugh - I just realised, this is the short version. Sorry ;) .

[Mackey Mouse]

I am so glad you stood up for your husband.. they do an mri... right? so ruled out anything there? What about a PET scan.. they are far more conclusive than mri's or cat scans..

Keep pushing.. sorry this is not normal.. no one should be having these kinds of issues without a reason..

Hugs.. and we will keep you bucked up..

[breezy1077]

I am so glad you stood up for your husband.. they do an mri... right? so ruled out anything there? What about a PET scan.. they are far more conclusive than mri's or cat scans..

Keep pushing.. sorry this is not normal.. no one should be having these kinds of issues without a reason..

Hugs.. and we will keep you bucked up..

What's a PET scan? I'll have DH ask the dr.s office about it.

Thanks Mackey Mouse :hug: .

[Mackey Mouse]

http://www.radiologyinfo.org/en/info.cfm?pg=PET&bhcp=1#part_one

The above explains it way better than I can.. They are now doing these on my DH as he has had a reoccurence of the cancer so these are more conclusive than the other tests that they give... also, more expensive, so they do not always recommend them..

I thought this part in the description of what a PET scan is was particularly important here:

"evaluate brain abnormalities, such as tumors, memory disorders and seizures and other central nervous system disorders
to map normal human brain and heart function"

I wanted to underline this part of the quote: seizures and other central nervous system disorders but am so computer inept, I did not know how to..

[dee47]

Breezy, I'm so glad you stood up to the doc! I can't believe they don't take it seriously!

Mackey is right -- a PET scan seems the next logical step, and finally he'll get the HD test! Yay! Also, the spinal tap should tell you if any sort of infection is causing all these symptoms...

Good news about the EMG!

No, what he's going through isn't normal and it's becoming more abnormal daily, it seems. So you were totally right to refuse to wait. This is not the case where symptoms are coming and going -- in which case waiting could make sense. This is progressive, and needs to stop, or at least controlled.

Blood work in stages could mean he'll need to have blood draws at different times of the day, or before and after taking a certain medication or hormone...

Keep at it...As hard as it is, you need answers. We're all with you! :hug: :hug: :hug:

[dee47]

Mackey, to underline text in your reply, highlight the text and press the big U in your editor. The text you highlighted will be underlined.

[dee47]

Dee... I had a very close friend die of inflammatory breast cancer years ago.. I am thinking how many years ago was it.. my youngest was in 6th grade and it was her friend's Mom...she is now 30.

And the scary thing about IBC is that survival rates have not improved in all these years, and most doctors don't recognize it even today.

I'm sorry for the loss of your friend. :hug:

[KPeveler]

breezy - just keep fighting! i keep getting told the same thing, that i just need to wait and see if i get worse. i just flat out refuse to wait longer. if you don't get an answer from this guy, find another neuro. I had to see literally dozens of doctors before they diagnosed me with my EDS (which isnt neurological)

just keep fighting and advocating, and you both will get there :)

[breezy1077]

Thanks again everyone!!

I'll have DH check on possibility of PET scan, but the MRI is already scheduled for Monday morning and the spinal tap will be next week - DH just needs to pick a day that he can miss work because they said he shouldn't work afterwards. DH says he's going back to work anyway - any thoughts about that?

I'm wondering if the ins. will approve the PET scan. They gave us such a hard time on the MRI. :confused3 I guess we'll see if the doctor will approve it first.

Same thing about the HD test. They're checking with ins.. But, that test's only about a hundred dollars, so we'll get it done either way.

If the doctor's right and we don't find anything with these tests, does anyone know what the next step should be? Should I push for more tests - and if so - which ones? Or, do I go to someplace like the mayoclinic or john's hopkins? :confused3

[KPeveler]

your DH is NOT going back to work after the spinal tap. he may not be able to walk or do anything other than lay on his side. he will most likely not be able to lay down on his back b/c of pain, and will probly not be able to lay on his stomach because of illness. most people after a spinal are very sick/nauseous, and a lot of them throw up for a while. he may be sedated, depending on his seizures (he will need to lay perfectly still for any length of time, depending on how good they are at doing this), so you will need to drive him home. depending on how he handles it, you may need to make a bed for him on the couch, if your bedroom is upstairs.

of course, this is the worse case scenario, so don't be scared. its not traumatic or anything, but a lot of people feel very ill for the rest of the day. if your DH is as stubborn as my dad is, it may take worst case scenarios like above to convince him to take the day off!!!

[breezy1077]

your DH is NOT going back to work after the spinal tap. he may not be able to walk or do anything other than lay on his side. he will most likely not be able to lay down on his back b/c of pain, and will probly not be able to lay on his stomach because of illness. most people after a spinal are very sick/nauseous, and a lot of them throw up for a while. he may be sedated, depending on his seizures (he will need to lay perfectly still for any length of time, depending on how good they are at doing this), so you will need to drive him home. depending on how he handles it, you may need to make a bed for him on the couch, if your bedroom is upstairs.

of course, this is the worse case scenario, so don't be scared. its not traumatic or anything, but a lot of people feel very ill for the rest of the day. if your DH is as stubborn as my dad is, it may take worst case scenarios like above to convince him to take the day off!!!

:scared1: I will definately tell him not to schedule any appts. for the day at least. Thank you. I don't know if I'll tell him everything in your post though. I'm already getting the, "I can't believe you talked them into more tests...they're not even going to find anything...", kinda talk.

I never thought about him seizing while they're trying to insert the needle. :eek:

[KPeveler]

:scared1: I will definately tell him not to schedule any appts. for the day at least. Thank you. I don't know if I'll tell him everything in your post though. I'm already getting the, "I can't believe you talked them into more tests...they're not even going to find anything...", kinda talk.

I never thought about him seizing while they're trying to insert the needle. :eek:

again, except in exceptionally rare circumstances (like you see on medical shows), a spinal tap is NOT dangerous. however, it does make you feel pretty miserable afterwards. a lot of people report dizziness or nausea after a spinal, so you may want to make sure that he doesnt have to walk far to rest afterwards. once again, if he is like my dad, he will not only feel icky, but he will be in a bad mood because he feels helpless.

the doctor will take all necessary precautions about the seizing during the spinal tap. i just wanted you to know they may sedate him, so you may want to ask the doctor about that. if he is sedated, it may be a longer appointment than you think.

i am NOT a doctor, so please do not take my word as gospel! i just wanted to raise some issues that you may want to ask the doctor about before you get there. also, you may want to make sure your husband is there for the conversations, so he doesnt try to do too much.

again, i am NOT a medical authority, so please do reading on your own. this seems to be a pretty good article from a reliable site:

http://www.emedicinehealth.com/spinal_tap/article_em.htm

Call the doctor with all questions, of course!

As to the "why bother with the tests" thing... i have been there. it is SO frustrating to look for a diagnosis. i have been trying for 7 years, and you just have to keep fighting. you both will figure it out! just keep advocating for yourselves, and you'll make it!

[breezy1077]

:hug: Thank you so much KPeveler. I will keep y'all posted as usual.

[Mackey Mouse]

I am reading here every day and watching for your updates Breezy... you would be surprised how many people are routing for you and your husband, they may not post, but they are reading. I know this as some have told me...so know that there are lots of people thinking of you both..

[breezy1077]

I am reading here every day and watching for your updates Breezy... you would be surprised how many people are routing for you and your husband, they may not post, but they are reading. I know this as some have told me...so know that there are lots of people thinking of you both..


:hug: Thanks Mackey Mouse, it helps to have the support, which is why I speculated on my prayer thread that perhaps the DisBoards were an answer to one of my prayers. Y'all have given me an outlet to express the concerns and fears that I otherwise would not express IRL. And, as a bonus, y'all have provided much support and comfort. Thanks to everyone, and for anyone else who is experiencing anything remotely similar, or who have the need to post on this forum - I will keep you in my prayers. :goodvibes

Thanks again. :grouphug:

[breezy1077]

Ok, so here's where we stand. Third MRI (this one of the neck area) - normal; new bloodwork - normal; Spinal tap - sched for next Fri.; HD blood test done, but no results back yet. :confused3

If nothing is found, what do we do then - what else is there to test for?

DH keeps telling me it's probably just stress - could he be right? He's not any more stressed than normal - he has a high stress level job and I think they would have already mentioned stress if that were it.


Ugh!!!

[debbido71]

I feel so much for what you and your family are going through. I am also going through similar issues myself and only have a "movement disorder" diagnosis so far. This is after 4 years! Sometimes there are no easy answers. The doctors can only treat the symptoms.
Anyway, I wanted to make sure you research spinal headaches before he has a spinal tap. When I had mine a few years ago. I was warned about the possibility of it happening afterwards. And that is what happened to me. Essentially if the hole doesn't close right up after the procedure, spinal fluid can leak. It causes a major headache like one you have never had before
( and I get migranes!) Anyway, if he gets one he needs to get to the hospital right away for something called a blood patch. I am glad I knew about it ahead of time. I told the ER doctor what the problem was so I got faster treatment, but it still took hours for me to get it done. Just check into it it pays to be prepared. Also, did his brain MRI show something called Chiari I malformation?? If so, let me know. Many doctors don't think this is an issue but it can cause many problems. Spinal taps aren't even recommended if he already has Chiari ,it can make it worse. Hope some of this helps.....

[breezy1077]

I feel so much for what you and your family are going through. I am also going through similar issues myself and only have a "movement disorder" diagnosis so far. This is after 4 years! Sometimes there are no easy answers. The doctors can only treat the symptoms.
Anyway, I wanted to make sure you research spinal headaches before he has a spinal tap. When I had mine a few years ago. I was warned about the possibility of it happening afterwards. And that is what happened to me. Essentially if the hole doesn't close right up after the procedure, spinal fluid can leak. It causes a major headache like one you have never had before
( and I get migranes!) Anyway, if he gets one he needs to get to the hospital right away for something called a blood patch. I am glad I knew about it ahead of time. I told the ER doctor what the problem was so I got faster treatment, but it still took hours for me to get it done. Just check into it it pays to be prepared. Also, did his brain MRI show something called Chiari I malformation?? If so, let me know. Many doctors don't think this is an issue but it can cause many problems. Spinal taps aren't even recommended if he already has Chiari ,it can make it worse. Hope some of this helps.....

Thank you so much! Sorry you have to go through this too :hug: . I'll have DH call today to find out. Thank you.

[Mackey Mouse]

Hugs Breezy, just following what is going on... hang in there..

[debbido71]

You're Welcome. Let us know what he finds out.

[breezy1077]

DH had the spinal done today. Obviously we don't know anything yet, but he got through it ok and did not have any pain or headache, just some discomfort. Thanks everyone, I'll keep ya posted.

:grouphug: hugs to all who find themselves on this forum.

[breezy1077]

I spoke too soon on the spinal tap. He is having a reaction. He had back pain yesterday and today he has head and neck pain that also radiates down his arms. I've given him pain meds and we have a call into the Dr..

Does anyone know if this warrants a call to Dr., or is it normal?

[disneyloveNY]

duplicate

[disneyloveNY]

[QUOTE=disneyloveNY;25811560]Originally Posted by debbido71
I feel so much for what you and your family are going through. I am also going through similar issues myself and only have a "movement disorder" diagnosis so far. This is after 4 years! Sometimes there are no easy answers. The doctors can only treat the symptoms.
Anyway, I wanted to make sure you research spinal headaches before he has a spinal tap. When I had mine a few years ago. I was warned about the possibility of it happening afterwards. And that is what happened to me. Essentially if the hole doesn't close right up after the procedure, spinal fluid can leak. It causes a major headache like one you have never had before
( and I get migranes!) Anyway, if he gets one he needs to get to the hospital right away for something called a blood patch. I am glad I knew about it ahead of time. I told the ER doctor what the problem was so I got faster treatment, but it still took hours for me to get it done. Just check into it it pays to be prepared. Also, did his brain MRI show something called Chiari I malformation?? If so, let me know. Many doctors don't think this is an issue but it can cause many problems. Spinal taps aren't even recommended if he already has Chiari ,it can make it worse. Hope some of this helps.....
AS Debbido71 said, it definitely warrants a call.

[dee47]

I spoke too soon on the spinal tap. He is having a reaction. He had back pain yesterday and today he has head and neck pain that also radiates down his arms. I've given him pain meds and we have a call into the Dr..

Does anyone know if this warrants a call to Dr., or is it normal?

Call the doc or go to the ER. If the doc doesn't call back quickly go to the ER. Serious complications of spinal tap are rare but not unheard of, and even something as simple as a leak needs attention. He needs to be checked.

[breezy1077]

Thanks everyone!!! I made him call again because of your responses. The Dr. said that if he developes a fever or if the pain gets worse - he should go in for the blood patch - I assume that's what they were referring to.

He is on strict bed rest for the day per doctors orders. If any of the above happens, or if he's not better by tomorrow - I'm taking him back in.

Thanks again to everyone - I'll keep y'all posted.

Oh, and I've already gotten the speech from DH I mentioned earlier and knew I'd get if things didn't go well - "shouldn't have done it - they're not even going to find anything - blah blah" :laughing: He's a stubborn one. I know I'm doing the right thing in pushing him to get the tests though. Thanks for the support :thumbsup2 .

[dee47]

Actually a fever would be a sign of infection, and he should go in for IV antibiotics. But they'll figure it out :)

Hang in there. You're a strong woman and we're all rooting for all of you! I can understand your husband's feelings -- he's getting all this really unpleasant stuff done and no results that can help him...That's why it's your job to keep pushing him (like you do so well!). It's really tempting to give up if there's no one to say "No, we HAVE to figure out what's going on!"

:hug: :hug: :hug: :hug:

[Mackey Mouse]

Reading as always.. Breezy, you keep pushing. You need an answer on what is going on with your DH.. Hugs, hugs, hugs..

[breezy1077]

:worried: He's getting worse, so he's agreed to go back to the hospital tomorrow (that's how I know he must be hurting pretty bad).

Just updating and a little worried.

[dee47]

Why tomorrow???? ERs are open 24/7.

[Mackey Mouse]

Please let us know how he is doing... I hate that he is in so much pain and they cannot find anything..

[breezy1077]

Why tomorrow???? ERs are open 24/7.

Stubborn, stubborn man :rolleyes: . The pain is better this morning, but the nausea has kicked in - weird that he's getting the side-effects in stages. It could be from all the oxycodon that he took yesterday too. He's going to rest for at least half a day. I think if the pain's going away - the leak's probably healing. Just taking it's time doing it.

Thanks for letting me "get this stuff out" on the boards. What we are going through is frustrating, but we also know to count our blessings. There are so many folks going through much worse and my heart goes out to them. The significance of that is not lost on me. I am happy that it's not ALS, and so is DH - for that we are grateful. And I am grateful to have all of you who take the time to care so much.

:thanks:

[breezy1077]

Well, I spoke too soon again today too. He got up and is having tremendous neck pain with nausea. He called the Dr. and the hospital - both said that they're almost certain it's not a reaction to the spinal tap because it's not a headache, it's neck pain that radiates down both arms. :confused3

DH thinks he pulled something or slept wrong, but he says it's like nothing he's ever experienced b4. It's horrible to have something chronically wrong because we're finding out you can't distinguish what's related or unrelated when you don't know what's wrong with you to begin with.

[dee47]

Is his neck stiff? does he have a fever? even if the answer is no, it ay be worth dragging him to the ER if he's in that much pain. The nausea can be meds-related, but than again, like you said, it's hard to tell with everything else that's going on...

Argh...I really wish I could do more for you! Here's another virtual hug. :hug:

[breezy1077]

Is his neck stiff? does he have a fever? even if the answer is no, it ay be worth dragging him to the ER if he's in that much pain. The nausea can be meds-related, but than again, like you said, it's hard to tell with everything else that's going on...

Argh...I really wish I could do more for you! Here's another virtual hug. :hug:

He said the pain in his neck is like having a muscle cramp (like the kind you get in your legs) but it never goes away. I don't think the nausea is meds related because he's been nauseous all day. And like I mentioned before, the pain in his neck radiates down both shoulders and arms and stops at the elbows.

He's called the Drs. twice today and the hospital once - everytime they said it couldn't be related to the lumbar puncture because he didn't have a headache with the neck pain. :confused3 He's going tomorrow whether it's related or not. I cannot get him into the ER b4 that - all he had to hear is that it's not related and he rationalizes it away by saying they're not going to do the blood patch anyway if they think it's unrelated. Maybe he's right. But he also doesn't want to lay in bed writhing in pain for another whole day either. Ugh....thanks for the hug Dee. :hug:

[annrae]

He said the pain in his neck is like having a muscle cramp (like the kind you get in your legs) but it never goes away. I don't think the nausea is meds related because he's been nauseous all day. And like I mentioned before, the pain in his neck radiates down both shoulders and arms and stops at the elbows.

He's called the Drs. twice today and the hospital once - everytime they said it couldn't be related to the lumbar puncture because he didn't have a headache with the neck pain. :confused3 He's going tomorrow whether it's related or not. I cannot get him into the ER b4 that - all he had to hear is that it's not related and he rationalizes it away by saying they're not going to do the blood patch anyway if they think it's unrelated. Maybe he's right. But he also doesn't want to lay in bed writhing in pain for another whole day either. Ugh....thanks for the hug Dee. :hug:
Hi: I hope your DH is feeling better tonight. This must be so frustrating for you. Hang in there and hopefully they will find a reason for all of this.

[dee47]

Hi Breezy -- just wanted you to know I'm thinking of you guys. How's your hubby today?

:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:

[breezy1077]

Hi all! Brace yourselves - I'm gonna vent a little...

So, after spending hours today in the ER (we went to the new hospital 5 min. up the road rather than the one he had the spinal done at) - we find out that he does need the blood patch - duh, after writhing in pain for most of the morning - we kinda figured that out. But, they didn't know why the other hospital and the neurologists office didn't schedule one. They REALLY didn't know why they both suggested the ER. The ER Dr. said that it's a scheduled proceedure not an emergant one. He said that the new hospital would be stepping on the toes of the other one if they did the proceedure there and that the anasthesialogists wouldn't take the risk of the proceedure if he's not scheduled for it. He was a cool doc and called in a favor to see if DH could have the proceedure done there - he hinted that if the narcotics he gave him took all the pain away - they wouldn't do it.:rolleyes1 Ok, we get it....question: is there still pain - answer: yes.

So what did DH do - uh no, not hurting. First I kicked the bed, then I mentioned that DH's pain is always low if he's lying down - it's when he sits or stands up that the pain shoots to a level 10 (which is where DH leveled the pain when admitted). So they sit him up and after about 30 seconds ask where it's at - level 3 he says. The Dr. says to call the other hospital to sched. the proceedure - he could only do it if the pain was still bad even after the narcotics. then he leaves. DH stays sitting up and starts complaining about the pain again. I ask where it's at - he says a 7 - and it really was. It didn't matter they just told him to not sit up or stand until tomorrow. And sent us home.

I'm soooo angry with the first hospital and the neurologist. It was sooo obvious that it was a spinal headache/reaction. The neurologist's office even told DH that it was probably just the stress he was under waiting for his results :headache: . That one still angers me. Uh, hello - we can't wait to get the results - we're not the kind to stress out over fear of them. The ER came to the conclusion right away that it was a reaction. All they had to do is hear what DH had experienced since the procedure and what especially gave it away was the positional pain - smaller pain lying down, HUGE pain when sitting or standing up.

Oh well, thanks for letting me vent. Again, we know things could be much much worse and are for so many. Just frustrating because I'm starting to wonder again if we have the right neurologist. DH asked for a list of everything they've ruled out or tested for. The neurologists office refused to even give us a list of what they've tested for. Instead they scheduled an appt for the DR to go over everything with us. I'm sorry, but that really just sounds like they only want the money. Otherwise, they'll just send us his medical records and let us try to determine what they've done. Ugh.

Long story short (I know...too late! :rotfl: ), DH's blood patch procedure is sched. for noon tomorrow. And the Neurologist's appt to go over new and old test results is the 30th.

[annie1995]

I'm so sorry your DH and you have to cut through all this red tape just to get the blood patch done:( . I know exactly the pain he is feeling. I had a wet tap when they did my epidural and I ended up with a spinal headache for a week. The Dr's didn't believe I had one and sent me home. I ended up going back in a week later and getting the blood patch done and walla, no more pain. Did they tell your DH to drink caffinated drinks? I'm not sure if he is able to or not, but that is supposed to help too. GL tomorrow, he should be feeling a ton better shortly afterwards. I'll be thinking of you guys.

[breezy1077]

I'm so sorry your DH and you have to cut through all this red tape just to get the blood patch done:( . I know exactly the pain he is feeling. I had a wet tap when they did my epidural and I ended up with a spinal headache for a week. The Dr's didn't believe I had one and sent me home. I ended up going back in a week later and getting the blood patch done and walla, no more pain. Did they tell your DH to drink caffinated drinks? I'm not sure if he is able to or not, but that is supposed to help too. GL tomorrow, he should be feeling a ton better shortly afterwards. I'll be thinking of you guys.

Thank you! and Yes, he's been drinking tons of caffine.

[Mackey Mouse]

Hugs, hugs, hugs.. I am getting so angry with all that your DH is going through, I could just spit..

Breezy, you keep pushing, and as far as the other hospital is concerned, I am not sure what I would do...of course it is related to the spinal tap... disgusting how they mistreat people..

Hugs, hugs, hugs... and you know what what he is going through is just as bad as what some of us are going through.. the unknown is sometimes worse than the known......hang in there.

[dee47]

You know, you never said on the boards before that the pain was getting worse when he stood up. If you had (maybe I missed it, I was swamped with my inflammatory breast cancer article) I would have told you right away it is ABSOLUTELY related to the spinal tap. How could they have told you otherwise? Any moron with minimal knowledge of medicine knows that pain in the head or neck, which gets worse upon standing up and starts after a spinal tap is a leak that needs patching! ARGH!!!!!!!!!!

Seriously, which hospital are you going to? I forget where you live. Maybe it's time to chose a hospital in a different STATE. The incompetence and BS you guys have encountered so far are not funny. You should insist on getting your records and go...someplace that has real professionals.

I'm done ranting. Sorry. I think of you all. Keep pushing! :hug: :hug: :hug: :hug:

[Mackey Mouse]

I do not remember what hospital she is going to either Dee.......but can I say this.

I live in a resort area, we have two hospitals.. there would be no way they would be treating my husband. We go to one of the best teaching hospitals in Boston for his treatment etc. Now we could make our life easier by having treatment down here, but I have seen the treatment down here. I was horrified at how dirty the treatment center was for chemo. I watched them suit up themselves and yet sit people down at chairs where the previous person had sat having iv treatment and not wipe the area down... never again for him. In Boston, I watched them scrub each station after the previous person was done having treatment. With chemicals and the possibility of blood being spilled, that is the way it should be.

I am just saying this if you are going to your local hospital vs a big teaching one you sometimes sacrifice on treatment.

Hugs Breezy, you keep pushing, but I am getting annoyed here with the lack of good treatment for your DH.

[dee47]

yet sit people down at chairs where the previous poster had sat

LOL Macky, you know you're addicted to the DIS when everyone is "the previous poster," even in a chemo treatment center...:rotfl2: :rotfl2:

[breezy1077]

LOL Macky, you know you're addicted to the DIS when everyone is "the previous poster," even in a chemo treatment center...:rotfl2: :rotfl2:

:rotfl: thanks for the chuckle. :goodvibes

I've been afraid to post the good news (because everytime I post that he feels better - he gets worse again :rolleyes: ), but he felt better today so he cancelled the blood patch. He's even gotten up a little today - and any other day that's been impossible. So....:yay:

Thanks everyone! Now we just need to figure out what this is. ;)


Dee, the hospital he had the spinal at was Riverside Methodist in Columbus. The ER was the new Methodist Hospital here in Dublin, and the neurologist is from a group here in town. If they don't find anything, we're seriously considering the Mayo Clinic (or at least I am - DH would still need convincing ;) )

I'll keep y'all posted about the results appt on the 30th. Thanks all and God Bless! :goodvibes

[Mackey Mouse]

See what happens when you type and you are upset over what is happening to someone else and then add in the tired factor......I fixed it, but did laugh. Yikes, see where my mind is, the Dis is such a part of my life, I even talk Dis.

Hugs......and Breezy, keep plugging, I am glad that he is having some good days...

PS.. to self, always reread slowly what you type.

[disneyloveNY]

Can I just make a suggestion? I am a physician from an excellent teaching hospital in NY. We often take care of patients that have already been treated at other local hospitals and....
Please, Please, Please take him to the Mayo Clinic to get a second opinion. However you can convince your DH, get him there. :hug:

[kimis]

Hi Breezy1077 I just read your posts and I wished I would have read them so much earlier. I am going through the same symptoms as your dh, even the cell phone vibrating on the hip area!
I finally went to the gp in Feb after I couldn't move my arms one night in bed. He said I probably had MS and sent me for a brain MRI. It didn't show any MS but he sent me to a neurologist with my films in hand.

She really listened. I told her that I never go to doctors on a regular basis and she would think all of this was in my head because the symptoms are all the time ( although they were getting more frequent). She said she never thinks it is in the head and she searches until she finds the cause. That was a sigh of relief for me. She said that many diseases imatate MS and she would check for all of them. She ordered two more MRIs right away. They were thoriac and spine. She also ordered a ton of lab work. From the time I had the tests done and when I went back for the results my symptoms had gotten worse. I had also devolped "clonus" which I had to look up. LOL It was shaking in my knees and arms (not parkinsons). When I showed it to her she said oh that has gotten worse. I said what this just started. She replied that no she had noticed it at the first appointment and she showed me her report from my last visit. I felt so relieved that finally someone was seeing what I had been feeling.

The test results came back. She said she was not ruling out the autoimmune diseases yet until I got my neck fixed. Apparently between C5-C6 disc the area is a mess. It is a herniated disc that has moved into the spinal cord, causing the spinal cord to be deformed. The doctor went on to explain that may be the cause for all of the symptoms but she didn't know. SHe said she doesn't usually see discs that bad (remember I am slow about going to doctors). She said at this point the only thing to fix it would be surgery. She said she isn't fond of surgery and hardly recommends it. I asked her about a chiropracter and said NO!

I was sent to a neurosurgeon who agreed the only way to fix it at this point was surgery. No shots, and diffently not a chiropracter.

The strange thing is that my neck has been hurting for the last two years but I didn't mention pain as one of my symptoms when I went to any of the three doctors. I figured I am 51 and out of shape so the pain must just be life and I would live with it. I thought everyone woke up during the night to readjust their pillows. LOL

I am sorry for the length of this but when I read it is was like reading my own story. My surgery is this coming Monday morning and I am going into the surgery expecting the symptoms to be gone soon.
I will continue to pray for all of you and you hope you get answers.

[breezy1077]

Can I just make a suggestion? I am a physician from an excellent teaching hospital in NY. We often take care of patients that have already been treated at other local hospitals and....
Please, Please, Please take him to the Mayo Clinic to get a second opinion. However you can convince your DH, get him there. :hug:

Thank you - I'm going to do my best.

Hi Breezy1077 I just read your posts and I wished I would have read them so much earlier. I am going through the same symptoms as your dh,.

Thank you for posting! I've had a sneaky feeling that it might be spine related. They have yet to do a MRI of the spine - which I'd like to see done. We'll see what the doc says on the 30th.

:hug: I'll keep you in my thoughts and prayers regarding your surgery and condition. Let us know how the surgery goes. I'll be thinking about ya. :hug:



:hug: MackeyMouse, you and your family are still in my prayers. Remember to take care of yourself too! :hug:

[Mackey Mouse]

We are enjoying the Summer here on Cape Cod.. thanks Breezy, after the summer we will be starting treatment, but for now.. we are so good.. Hugs and thanks..

I gasped when I read they had not done an MRI of the spine... sorry, I did. I would think they need to get moving on this and thanks to the physician who came on and posted here and said do the best you can to get him to another hospital.... truly, it sounds like you have to go where the big guns are and try to get answers.. I know you are doing your best to get DH to agree with this and we are praying that he hears you..

Like I have said before, I think Tom would agree with having treatment here where we live, but I have said absolutely no way for the reasons I have stated before. NO WAY..and so we ride into Boston, we live in an apartment in the house he grew up in, picture the 1950's, but we are grateful that we have that option....I have made it comfortable for us....he has his TV... we have the computer, and a bed, what else do we need...basic kitchen and comfortable chairs.....we stay there..

I know that at MGH if you sit with a hospital social worker, they give you options for places to stay that are reasonable for people who have to come from far away for treatment.. I am not sure how far you are from some of the better teacher hospitals, but it is something you might want to look into if you need to.

[breezy1077]

Well, I thought I'd have an update for y'all today since DH was supposed to go see his neurologist yesterday, but he refused to go. So, I'm going to have to convince him to keep going.

Wish I had more to tell you. Hugs to all!!!

[dee47]

Or just make a deal with him to go to the Mayo Clinic and sort this out once and for all...with real doctors!

Hugs to you. When you didn't post anything I was worried the news was really bad...I can see why he is so frustrated.

:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:

[breezy1077]

Or just make a deal with him to go to the Mayo Clinic and sort this out once and for all...with real doctors!

Hugs to you. When you didn't post anything I was worried the news was really bad...I can see why he is so frustrated.

:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:

Thanks. ::yes:: you might be on to something. I think Mayo Clinic may be the right choice. I go to see my Endocrinologist on the 7th at the Cleveland Clinic - he's awesome! I may ask him his opinion given all the test results, about what he thinks it might be and what to do next.

BTW, we did find out that the spinal test results didn't show anything, and he tested negative for Huntingtons. :confused3 I can't remember if I've posted the results yet, and I'm too lazy to look through my last posts. LOL

I did tell DH that we're partway into our deductible for the year and it doesn't make sense to wait til next year when we'd have to start all over again - I'm appealing to his logical, fiscal side as a sneaky strategy to get my way. ;)
I think it might be working....fingers crossed!

Thanks and hugs all around! :goodvibes

[breezy1077]

DH went to a follow-up appt. today with his neurologist to find out where we go from here. Neurologist told him the good news is that they haven't found anything. He's exhausted all neurological options. When DH asked him if it could be auto-immune, Neurologist told him that they'd tested for some of that stuff too - so no. :confused3 DH asked what about the choking - neurologist said he would refer him to a GI specialist, but he thinks it's unrelated to the seizures. As for the seizures - Neurologist did one of these...:confused3 . :headache:


I have no idea what to do. What are the odds that seizures, nerve damage, dizzyness, tremors, and choking all crop up in the last year and are all unrelated symptoms?!? As a logical person, it just doesn't make sense to me. :guilty:


I know, I should press him to go to the Mayo Clinic, but I'm so afraid we'll go through all this just to be told the same thing - that they don't know what the heck it is.

[kimis]

Hi breezy1077 You must be so discouraged.
I would say keep going to doctors until you find out what is going on. I am not saying that your dr isn't capable but it might need just the right dr to find the problem.
Yes encourage him to go to mayo or where ever.
With shows like "DiagnosesX' or "Mysteryllness" it is apparent that not all drs know it all.
Keep searching and hang in there.
In the meantime you are in my prayers!

[dee47]

Breezy,

The advantage of a place like the Mayo Clinic is that their doctors are able to connect more dots in better ways than doctors in small facilities. They may look at all the tests he had so far and find a value that raises a red flag for them, even though your local doc didn't find it significant. They have more experience and more people to talk to in the "have you ever seen something similar?" department.

I absolutely agree with you that all his symptoms have to be related in some ways. And I still think he should have a PET scan, but don't push for any more tests right now -- get his records (and him) to the Mayo Clinic. You owe it to yourself, and he owes it to you and the kids -- his symptoms are worrisome as they are, and they seem to be worsening. You guys need answers, and :confused3 isn't acceptable!

:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:

[Mackey Mouse]

Breezy... hugs, hugs, hugs, I am not sure what to say here other than I would get my DH to the best teaching hospital in my area and not stay locally..

If after trying the best, you still have no answers, well I am not sure what the heck I would do. The choking thing can be part of GERD.. I do have that.. I also have Vertigo sometimes, not always.. it can come and go, part of the aging process for me.. but the other symptoms, I do not have..

If not neuro, what about ortho?? maybe he has some pinched nerves.. I am grasping here, but I would not give up..

Hugs.

[breezy1077]

Just thought I'd give y'all an update. DH had given up on testing. Nothing would budge him, so I gave up too.

Our neighbors host a prayer group every Thursday. We weren't members, but they had offered to and prayed over DH a couple times, but he was still getting worse. Then our neighbors prayed over him one evening and his seizures went from the same amount he'd have in one day - he'd have in a week. So the seizures were way down But he was still aspirating and that part was getting much worse.

Well, the neighbors pastor was over one night and he and his wife along with our neighbors prayed over him and......completely healed. Never had a seizure or choked after that.

DH continued to pray and things that had plagued him for years, like his leg giving out/tripping, pain in his knees, pain in his wrist (he couldn't even do pushups anymore) - just gone.

We're thrilled and give complete credit to God. DH says that of all the things gone, he's most thankful for being rid of the pain. It's the first time since I've known him that he's been pain free. I'll leave this thread with a yay, God! :yay:

And a big thank you to everyone who's been so helpful - I honestly don't know how I would have gotten through this without the help of y'all. :grouphug: I debated whether to post the update - I mean it's not something you hear about everyday, but DH is the one who prompted me to tell y'all what happened.

Prayers continue for all in need. :grouphug: Love you guys! Thank you!

[TeresaNJ]

:hug: Thank you too for pointing me to this board. It has opened my eyes in a big way and makes my problems seem small. "Let Go, Let God"!:)

[minniebeth]

Breezy, this is the first time that I've seen this thread and read through your challenging journey...I'm so sorry what your DH and you have gone through and I share in your praise that your DH is pain free and doing well!
I will continue to pray that it continues!
Hugs, Minniebeth

[breezy1077]

:hug: Thank you too for pointing me to this board. It has opened my eyes in a big way and makes my problems seem small. "Let Go, Let God"!:)

:hug:

Breezy, this is the first time that I've seen this thread and read through your challenging journey...I'm so sorry what your DH and you have gone through and I share in your praise that your DH is pain free and doing well!
I will continue to pray that it continues!
Hugs, Minniebeth

Thanks minniebeth. :goodvibes

We'll never know what he was healed of....But we are just so grateful for the miracle that's happened! Before this healing happened to DH, I would have been the first one to question whether such a thing could really happen. But after witnessing it first hand, and knowing what shape he was in before it happened.....all I can say is, "Yay God!"

Like I said in my other thread, "when has God answered your prayers", the only reason I came back to tell what happened is because DH wanted me to tell his testimony. We learned that the Hebrew root word for testimony means "to do again". Hopefully, someone who reads what happened can claim it over their own lives, and someone else can be helped from it.

I may not post often enough on this forum, but I continue to pray for strength, grace, peace, and of course healing for all who need it. :grouphug: