My 2nd opinion with the M.G. specialist Yuk!
 

:confused: The more I try to find the answer to why I still can't swallow, the more I get confused by what the Doctors find on tests and what the tests mean!

I have M.S. and M.G. at least thats what I was dx. with over 22 years ago for the M.S. and 7 for the M.G..

My Neuro said he dosen't think the M.G. is the cause of the swallowing going bad. It started in April and after 2 rescure of I.V.I.G. I was getting worse not better so he put me in the hospital for 4 day high dose of more I.V.I.G., I got even more weaker and so they put in a peg feeding tube and told me I'll feel stonger in a few weeks. I did start feeling stonger after a month but NOT my swallowing, that got worse where now I can't swallow my saliva.

The Stange part is I can swallow when I go into a sleep state. Thank God!

The 2nd opinion Dr. M.G. specialist said I am to strong ( MG wise)to have such a servere swallowing problem that I'd need a feeding tube.

When I asked her what she thought it could be, she said she dosen't know and it's not her job to try and figure it out. She said she was asked by my Doc. to see if the M.G. is whats causing the swallowing problem, period. It will be up to my Neuro to do more testing to find out.

They did a neurolgy test on me, and I hope you don't mind if I list some of the things they found and hope someone can tell me what it all means.

Reflexes: Reflexes: 2+ at bilateral biceps, brachioradials, and knees. Trace a bilateral ankles. Downgoing toes.

Functional Gait : Normal gait. Unable to walk on heels or toes. Tandem unsteady. Romberg positice.

On neurologic examination and electrodiagnostic testing, we found evidence of a sensorimoter polyneuropathy of unclear etiology.
We will defer further workup of her neuropathy to her primary neurologest although we do not think this is directly related to her dysphagia.

Her dysphagia is of unclear etiology at this point, but we do not believe it is related to myastenia gravis or her neuropathy. Further evaluation and interventions with a speech therapist may be warranted to investigate a central cause (MS)


I had told her I went for the bariam swallow and ended up choking on the first drink.
I tryed another drink and the tec. asked me to push the drink to the back of my throat which I did, but again I could not swallow it. so it started running down the back of my throat and there was no gag reflex or normal reflex to catch the drink so the Tec said to try and cough it up. She said the test was over and if it is a pyhosamatic problem she never seen one so servere.

I already had 3 months of Vital Stem speech therapist treatment with no improvement, this was before even going to the 2nd opinion.


O.K. Sorry this is so long, but does anyone know if sensorimotor polyneuropathy has anything to do with M.S.? .....and could that have anything to do with my swallowing or lack of it?

Thank you for taking the time to even read this long post, :o

Hi GrannyJo,

I wish you didn't have to go through this. I don't know about the tests and what they mean; I'll leave that to Annie and Alice and the others. I just can't remember - how were you diagnosed with MG, did you have positive antibodies? Have your doctors ruled out Oculopharyngeal Muscular Dystrophy?

Tatia

hi Geode, I was dx with MG by a tenasen( bad Spelling) test and my blood work was borderline, that was 7 years ago and that Doctor didn't keep good notes so my new Neuro is not sure if I'm in remission or if I was misdiagnosed back then.
But Then Why has having IVIG every month keep me going steady for those 7 years up until this past April..

Wait, you've been having IVIG every month for seven years? If your blood tests negative for MG now, that's probably because of the IVIG. That's exactly what IVIG is supposed to do: it's supposed to temporarily reduce (or eliminate) the antibodies in your blood. If the tests can't find them, it's not because you're in remission; it's because of the IVIG.

Am I making sense? I just did my taxes, and I think I have absorbed a little insanity from the IRS.

Abby

Yes, I asked my Neuro about that, and plus I had 3 rescure amounts of the IVIG through out the 3 1/2 months before taking the blood test. He said it could make a defferance but the fact is my swallowing has not gotten better so if I do have MG or its in remission it still not the answer to my swallowing problem.

The 2nd opinion neuro said I should stop the monthly IVIG's to see if I take a turn for the worse and then they will retest me and know if the IVIG is making a differance,
I was due today for my monthly treatment and I have to say I am a bit afraid to see how my body is going to do without it...time will tell.

My neuro stopped my IVIG treatments to see if the Imuran was having any effect after 12 months of Imuran. We quickly discovered the Imuran was and had done nothing. So I would say he has a good idea.
Mike

..My Neuro called this morning and said he consulted with the 2nd opinion Dr. and the other Neuros in his group and one of them said they had a women with a swallowing problem like mine and they said they were able to find a lesion on her brain stem area and then he said he wants me to go for this MRI, it's called a 3T MRI. My regular MRI did show anything but this machine MRI I quess shows more and they will focus on the brain stem area.

He said he knows now its not a nero muscular problem so he's checking if its the M.S. problem

I'm glad he is asking for help from the others and trying another route to find out whats stopping the swallowing.

It does sound like your doc is trying everything he and his colleagues can think of. I hope this 3T MRI helps with a dx. Pls let us know what comes of it. I hope you are able to find some relief soon!

GrannyJo, I'm sorry for all you're going through.

There are a lot of things that can cause a positive Romberg Sign.

http://www.jpgmonline.com/article.as...aulast=Khasnis

Did they test your B12 levels?

Ditto on what Abby said about the tests going negative. Have they retested your antibody levels?

You could have a lesion. That's quite possible.

Going off of IVIG doesn't seem really sensible. It's sort of like a mad scientist experiment. ;)

Be prepared for them to suggest a lumbar puncture at some point.

Here is some basic info for you.

http://www.neuroexam.com/neuroexam/content.php?p=32

http://www.dartmouth.edu/~dons/part_1/chapter_8.html

I hope you get some answers soon. I can't imagine how tough it would be to not be able to swallow.

Annie

Thank you Annie, I already know I have MS but the Doc. kept thinking the swallowing problem was from the MG. Since I was dx. with both he felt MG was more likely the cause of week swallowing.

It was just so long and hard to break out of his box and think what else can be the cause since the rescures of IVIG would not bring me out of it
I'm really glad I went for the 2nd opinion and He (the Neuro) was asking his partners what could be causing this.

He has mention me going on steriods but I do very bady on them. I get weeker instead of stronger and a bit crazy thinking.
So then he mentioned ATCH which I had taken many years ago but I also did badly on those shots, so I guess its all wait to see what the 3t MRI picks up and if there is something there how they can treat me for it.

I am still a bit concerned about the IVIG but I think maybe they are right, thats the only way to see if its doing me any more good or not.

I had a spinal tap over 20 years ago and it showed I have MS, I don't want to go thru that again. It took me 2 weeks before I could lift up my head without the most horrible headache from it.
Thank you again for your support :hug:

P.S My B-12 is over 800 and I have started taking a drug food product called Deplin which is a broken down form of Folic Acid since my blood work showed I have some thing wrong where my body can't break it down and so all my life I haven't been getting enough folic acid which is a must for the brain and heart. I have to admit I feel my energy level Last alot longer since I'v been on it. Less moody too :)