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Discussion:
Eureka... puzzle pieces FIT?!
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1) At 90mg of Mestinon, I began noticing amazing muscle tone and sense of power in my glutes.

2) I found out that in PT, I had been treated for bilateral weakness of 3+ in hip extensors and hip abductors. (My insurance company had shut me down because I was not showing adequate response to treatment.)

3) After reading on hip extensors and abductors, I thought of trying my luck at heel/toe walking, which I had been unable to perform at ALL for my Neuro. I COULD DO IT!!! With very little trouble, from my perspective. My Neuro's notes had had said heel toe walk was "absent."

4) I then tried the heel walking, which I had also been unable to perform for my Neuro... and I think it was pretty near PERFECT!!!

5) I tried standing on one foot, and was able to maintain my balance. In PT, I had been unable to maintain my balance standing on either foot.

5) Since I could not remember if I felt the power in my glutes WITHOUT Mestinon, too, I took notice of that when I got up this morning. Weak and wobbly... not powerful.

6) I then retried the heel toe walk and the heel walk without Mestinon and the heel/toe was

I wonder if demonstration of this discovery will allow my Neuro to find that MG IS affecting my legs (if not my limbs in general)... and not just my eyes and possibly my face, his current thinking!!!

Love,
Rosie
Posted on 12/16/12, 07:33 am
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Reply #1 - 12/16/12  7:40am
" Oops... what happened to the rest of #6?!!! Without Mestinon, the heel/toe walk was crazy and the heel walk was not good at all. I forgot to try standing on one foot, but will try that one tomorrow morning! Thanks for reading, friends!! "
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Reply #2 - 12/16/12  9:29am
" Go for it ! Rosie.

It will be interesting in the future as they find other antibodies (like LRP4) if we have a specific clinical course that correlates much like MUSK+ and LEMS patient's clinical findings do now. That may affect treatment as well as diagnosis.

(For people who have not been on long, the LRP4 antibody test is not available commercially, but has been demonstrated to be positive in people with MG who are otherwise seronegative.)

b. "
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Reply #3 - 12/16/12  10:19am
" B, YOU are the one who got me thinking about hips, and why I got a copy of my most recent PT notes. I can't thank you enough!!!

This morning, I guess I am paying for going out to a party last night... and going to Starbucks this morning. Three hours after taking 120mg Mestinon, my eye is still hanging way down and my legs are still weak. I tried the heel toe walk again and if I had been doing it on the highway for a police officer, they would have slapped the cuffs on me.

Yesterday, when I did well on the heel/toe walk and heel walk, I had been resting all day. The previous day, I had experienced the same symptoms I have this morning while helping my brother decorate for Christmas. ARGH!!!

In summary: 1) Mestinon allows me to do things I absolutely CAN NOT do without it. 2) Mestinon does NOT allow me to do these things when I have already done too much. 3) Mestinon works ONLY when I am well rested.

My conclusions: 1) I have Generalized MG. 2) 120mg Mestinon every three hours... and pushing myself to the limits without concern for causing damage... does NOT constitute an appropriate or adequate treatment plan. 3) I do NOT want to wait until some time in February to see my Neuro.

Rosie... excited to see the pieces coming TOGETHER!!! "
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Reply #4 - 12/16/12  10:53am
" Mestinon treats symptoms but as we all know, does not solve the problem for most of us--too many bad antibodies attacking/blocking/destroying our muscle receptors.
In "mild" cases of MG, sometimes mestinon is sufficient. But in MG, the inexorable attacks catch up with most of us and we progress into general MG.
The course of the disease is usually described as the first couple of years getting things under control and then a long period of balance. I think the first few years are a problem because we are diagnosed only after damage has been extensive to our muscle receptors followed by the timidity of patients and doctors to treat our immune system directly to stop the ongoing damage from continuing.
MG crisis is usually when we have a respiratory problem (cold/flu) added to breathing that is already compromised from MG, usually untreated or barely treated.
Anyway, I am a firm believer in getting treatment more than mestinon. Too many of us end up in the emergency room and ICU on respirators from conservative treatments! (this is a personal opinion) "
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Reply #5 - 12/16/12  11:54am
" Not having any known cure for MG, most of us are trying for control of the symptoms. Mestinon has shown to be the front line drug for controling symptoms. Without the use of Mestinon I would not have any life beyond lying in bed. On the other hand the drugs that are used to try and gain a more permanent and long lasting control, do so by crippling our immune system. Leaving us open to many problems. I think it takes a balance of treatment to give us a life. Just my opinion. Will "
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Reply #6 - 12/16/12  10:07pm
" empowered, rosie!

b, i need to find out about that testing. "
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Reply #7 - 12/16/12  10:40pm
" elinora,
The abstract of the article is posted bu Bruce in the links group under scientific papers discussing seronegative myasthenia. The first link no longer takes you to the full article, so I will copy and paste that one, too. There is a podcast somewhere with Dr Burns interviewing the author. I am having eye troubles tonight but if you are not, Google the author and see what comes up. The general idea is that LRP4 and agrin need to be functional before MUSK can do its job of organizing the muscle endplates and that antibodies to LPR4 can be detected, but the test for them is not yet commercially available because of its complexity and although she is processing human sera, she has more than she can handle right now. b. "
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Reply #8 - 12/16/12  11:02pm
" thanks, b! "

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