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Old 11-07-2011, 01:35 PM #1
GrannyJo4 GrannyJo4 is offline
Junior Member
 
Join Date: Aug 2011
Posts: 35
10 yr Member
GrannyJo4 GrannyJo4 is offline
Junior Member
 
Join Date: Aug 2011
Posts: 35
10 yr Member
Default I went from slow swallow to No swallow on feeding tube

I have M.S. and M.G.
My swallowing started getting weeker in the spring. I can't get the click message to my throat to swallow. The food would just sit in my mouth not knowing what to do. I lived on Ensure and pudding for a couple of months.
My neuro did two rescue treatments of I.V.I.G. in April and then in June. neither helped the swallowing.

In August I was going down fast. The Neuro put me in hospital for another I.V.I.G. resure of a much higher dosage and for 4 days, 10 x the amout each day of my reg monthly doage I get once a month. I became weeker with each day of treatment. The hospital Doctor said that was to be expected and I should start seeing an improvement in a couple of weeks.
While I was in the hospital they put in a peg feeding tube, they told me they can take it out when I can eat and drink again.
That was in August 2nd and I still can't swallow, not even a sip of drink or my saliva. I have to spit out so I don't choke.

This is the Big question ( Why am I able to swallow automatically when I am sleeping)? I don't drool, choke or cough when I'm in the sleep state.
I am Thankful for that but it has really confused all my Doctors and me!

Today my Neuro did a emg and sfemg and said it was normal. The blood test for M.G. that I had done came back normal. The blood test I had done 7 years ago for M.G. came back abnormal.
The Neuro is 80% sure my swallowing problem is not from a M.G. flare.
We don't think it's the M.S. because I have no other weakness going on in any other part of my body, plus my MRI hadn't changed.

I ASKED HIM TO SEND ME FOR A MUSK BLOOD TEST AND HE SAID YES, O.K. BUT HE DIDN'T THINK THAT WOULD COME BACK ABNORMAL BECAUSE MY ENG AND SFEMG CAME BACK PERFECT.

he said he recommends I Get a second opinion from another Neuro muscular specialist in Rochester N.Y.

I am tired of all the test and not knowing. The feeding tube is another whole bunch of trouble with stomach problems.

Why can I swallow when I'm in a sleep state? I am aware enough to feel my self swallow with no trouble right up to when I become awake and the I start feeling my throat filling with saliva and I can't swallow it.

Could it be phyco symatic?

Forgive me for such a long post.
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