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

[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]

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).

I can understand your frustration! Agh!

Good luck tomorrow.

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.

Thanks Mackey Mouse, you're an inspiration.

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.

 

[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.

You're all in my thoughts.

 

[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!!

 

[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?
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?
-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.

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 .

 

[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!

 

[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.

 

[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. 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?

 

[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!!!

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.