Quote:
Originally Posted by GrannyJo4
..Yes Alice MD, I agree about knowing that the more you repeatally use your muscles, with M.G. the weaker they become.
I was so excited when my primary Doctor told me to swallow after I told him I can't and I can't even swallow my saliva. He went and got me a glass a water to drink and commanded I drink a sip, so I did, which really surprised me, the doctor and my husband, well anyway, the excitement is over because I realize now it wasen't the beginning of being able to drink or eat again. It was just a little trick this dark shadow of mine called M.G. is playing on me.
The doctor said each day build on it (the swallowing ability) but after a few days I realize I'm not able to. 
You see, yes I'm able to take a few sips of liquid..If I'm not to stressed, If I'm not to far away in the month from my last I.V.I.G., If I'm not too tiered from not sleeping well the night before and If I try for the 19 sip and at the 19 sip my throat muscles say Nooo more.
I can actually feel my swallowing getting harder to click after each swallow until it completely stops.
This is really stressing me out which of course is also bad for the M.G.
I'm going for my 2nd opinion Dec 22. I am so hoping they can fiqure out how to help me. |
When I read you post about being able to swallow again, I didn't want to comment because I thought that maybe I am wrong and your doctor did help you get over your fear, so why should I ruin that?
But, to be honest with you, I didn't think he did. I think he is a very nice and caring physician that really wanted to help, but has a very superficial and limited understanding of the complexity of neurological diseases.
I agree with Tatia, that some of what you experience fits movement disorders. What is termed "movement disorders" is usually the result of a brain lesion that leads to loss of the normal control and co-ordination. Many times you can temporarily over-ride it by strong cues. For instance patients with Parkinson's disease who can hardly move, will run when they see fire.
Or patients with Tick disorders can "hold" them for a while, but then they will burst out.
There is a nice study that shows the use of guided imagination and various relaxation techniques leads to decreased tremor in patients with Parkinson's disease, probably again by stimulating other parts of the brain that over-ride the abnormality.
This is not "mind over matter", but a physiological response of the brain.
I think that possibly what you need is not a specialist, but a good general neurologist who has a good understanding of MS, MG and movement disorders. Someone who will see you as a full person and not an EMG result.