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.

Hi. I'm sorry you're going through so much at once.

I don't have any answers or suggestions to your big questions--just one minor comment. You say that your blood test for MG came back abnormal seven years ago, but a recent one came back normal.

First of all, antibodies in the blood fluctuate, and the level of antibodies is not indicative of the severity of the disease. Many people here tested negative at one time and positive at other times. There are a lot of us, too, who have never tested positive and are still diagnosed with MG.

Second, the fact that you had IVIG a few months ago might be the reason why the recent blood test came back normal.

So the fact that your recent blood test is normal doesn't mean you don't have MG.

I wish I could help with your question about swallowing. It is definitely weird that you can swallow while asleep, but not while awake. I think it is a very, very good thing to get a second opinion from another neurologist who specializes in neuromuscular diseases! I'm a huge fan of second opinions. Every neuro has different experiences, different ideas, different areas of expertise.

Some people who don't improve with IVIG improve with plasmapheresis. Maybe your neuro would be willing to try that.

I hope you get answers. I found that stage of my disease to be the absolute worst--not knowing what's wrong, wondering if it's psychosomatic, not knowing what's going to happen next--it's enough to throw anyone into a terrible state.

Abby

Thank you Stellatum,
For your post, understand and good advise. I will get that 2nd opinion afterall.
My Neuro seems afraid to send anyone for plasmapheresis. I asked him why he didn't send me for plasmapheresis instead of a third rescue of I.V.I.G. since the first two rescues didn't work. He said the I.V.I.G. was just easier to take. Thats when I told him it wasen't easier then having to have and live with a feeding tube. He said both treatments are considered the same in some testing so he went with what would be easier on me.
It just dosen't make sense to me. I often wonder if he would have done the plasmapheresis first instead of the I.V.I.G. it would have stopped the swallowing from getting this bad.
Whats done is done. I will try a 2nd opinion and get some fresh ideas.

My neuro nurse said that she felt that Yes I have M.G. and it went into swallowing crisis, but now she feels it put a bad fear in me to swallow and choke.
It's all very confusing.

GrannyJo4, I can ONLY swallow if my chin is level OR if I "tuck" my chin OR if I put my chin over either shoulder and "tuck" it. I CANNOT swallow like a regular person -- as in tilting my head back to take a swig of Coca-cola out of a bottle. A speech therapist taught me the swallowing "tricks". I ALWAYS use a straw to drink -- this keeps my head in the proper position. ALL straws don't work -- I can't get a "vacuum"/suction on the larger ones -- I buy VERY skinny ones which I grip with my teeth and tongue. Because I have significant Bulbar symptoms, my lips will not grip the straw. (I have the same problem with my asthma inhaler -- and had to cut/modify a plastic ketchup bottle with a hole to fit the breathing part of the inhaler, so that I can inhale through the slim spout.)

I suspect that when you are asleep, your chin in in the level or "tucked" position and THAT is why you are not having trouble swallowing.

I'm having increasing difficulty swallowing my pills. I can swallow solids OR I can swallow liquids (by using the above mentioned methods), but MIXTURES of solids and liquids are a problem. Currently, I toss my head back trying to get the pills into "position" in the back of my mouth at the opening of my throat, then level my chin to swallow. The pills "float", so I sometimes do the head "toss" half a dozen times before success. Even then, I often end up with liquid in my nose -- which I HATE because it burns. But, all of my meds do NOT come in liquid form. I usually let my Mestinon melt under my tongue -- that is the only med I take multiple times a day.

I'm glad you're getting a second opinion because I don't like the fact that your Neuro wanted to go with the "easier" treatment instead of trying to find what would work to help you get relief from your MG symptoms. Plasmapheresis was used to treat MG before IVIG came along. Fortunately for me IVIG works but there are others which don't get relief from IVIG and plasmapheresis works for them. Thats why MG is called the snowflake disease. It can be very individualized and what works for one person may not work for another.

I'm so sorry to hear that you are having such difficulty with swallowing and hope that with this new Neuro will come new treatments to help you get better.

My thoughts and prayers are with you.

Shari

Sounds very puzzling and frustrating.

I agree it is unusual to have swallowing difficulties when awake and not when you sleep. It takes a very open minded and caring physician to try and figure it out. You clearly don't fit the "box".

Did you have a swallowing study? Where you seen by a speech therapist?
This could sometimes help in finding the cause of the problem and better directing your care (at least symptomatic).

It does sound like you may do better, when your muscles are relaxed (such as would happen when you sleep). Did you try any relaxation techniques to see if it could help?

Psychosomatic is basically what physicians can't explain (yet), so technically it is psychosomatic. Ulcer was psychosomatic until the discovery of the bug that causes it.

When physicians say something is psychosomatic they basically tell you that they do not have a clue of what is going on, don't see it as their job to try and figure it out and are not courageous and honest enough to say this to you. Blaming it on your "emotional problems" is a great way to deal with their frustration, but not very helpful for you.

This is very different from truly addressing your emotions ( I have yet to see a person who is ill, that does not have an emotional response to his/her illness, mostly if his physicians don't know what to do) and giving you emotional support. In fact, it is almost the opposite.

hope you feel better soon.

Symptoms disappear during sleep
 

You don't have any feeling of tightness in your throat, do you?

Dystonia is a movement disorder with involuntary muscle contraction. Dystonia usually disappears during sleep. The problem is confined to the brain, and doesn't fall under the neuromuscular specialty. Neurologists who are Movement Disorder Specialists treat things like Parkinson's, Essential Tremor, Dystonia.

If your other doctors can't find any cause, maybe this is something to consider?

Tatia

GRannyjo04
 

First of all, let me say how very sorry I am you are going through this.:hug:


I too had problems with swallowing - had the swallow study - was told by the dr I was "fine":mad: and 2 weeks later was in the hospital with tubes everywhere.

I also agree witht the others that swallowing is easier, much easier when my head and chin are tilted down or to the side.........brian taught me that when I first joined...

This is NOT in your head!!!!!!! Get a 2nd, 3rd, 4th opinion!!!! You owe it to yourself and everyone who loves you to feel better........

Hugs!
Erin Hermes:hug: