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?

 

[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?

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

 

[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

 

[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) . 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?

 

[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 . 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!

 

[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!

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 he looked to be in his 90's and he was only 61. I'll keep everyone updated. Again, thank you all!!!

 

[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]