Quote:
Originally Posted by teachermom
Thanks for letting me intrude on your board. I would appreciate anyone's advice or shared experiences with this medication. Part of me thinks I should give it a try. But another part of me is terrified. I am 30 miles from the nearest hospital... the two options are subpar to say the least. I am afraid that if I had a bad reaction no one would be able to help me.
I have small fiber neuropathy and I have been doing fairly well once I found out what was going on. However, I have been having issues with swallowing and a "tight" chest since December.
I am a runner and was running 25-30 miles per week until a few months ago. I am finding it difficult to walk/jog more than 1.5 miles currently. I had a pretty scary incident with my chest muscles in May while weight lifting (nothing too heavy). Through process of elimination, my neuro feels that I am having esophageal spasms. I still have them a few times a week, but nothing like the first time. They seem to be brought on by heavy breathing--when I try to run or exercise.
This summer my body is quitting. It is on strike. My blood pressure is very low and some days I am too tired to hold up my head.
I have been tested for MG---no antibodies, all other blood work normal, and nerve conduction test inconclusive because "patient couldn't relax."
Yesterday, my neuro (different one) suggested that I try mestinon for my autonomic symptoms. I am afraid of it.
I have read that some people become paralyzed on it. I am also afraid of anything that might trigger the terrible chest spasms. It feels as if a tennis ball is stuck in my chest when it happens.
He had stated on the phone that he would be giving me a small dose. However, an email from Walgreens said it is 60mg. I can't take that much. I know my body. I weigh 105, am 5' 2". That looks like way too much for me.
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Hi. I was a runner as well pre-MG diagnosis. Same weight and height. I was diagnosed with Ocular MG in June 2015. My neuro-opthalmologist put me on Mestinon in September 2015 for double vision and eye fatigue in September 2015. He wanted me to start at 60mg 4x daily and bump up to 120mg over about 2 months. Hahaha... NO. I know my own body as well and that was TOO much. I instead started with 30mg (half tablet). This was a good starting dose for me. I had mild side effects for about 5 months - similar to drinking too much coffee. I also HAVE to take it with at least a small meal otherwise I get stomach upset. In May this year, I got my generalized MG dx. I now take a half tablet for my 1st and 4th dose and 3/4 table for my 2nd and 3rd. Sometimes I have to take a 3/4 dose to start the day, but not often.
When I returned for my follow-up appointment with my neuro-opthalmologist several months after starting the Mestinon, I told him that I had adjusted the medication to suit my symptoms and provide me the best benefit. He replied he normally would be upset with a patient doing this, but in the case of Mestinon & MG, it ("titration") was an appropriate course of action to take because each person with MG is different and responds differently to medications.
You could try starting with a half pill (30mg). If you have more than just mild side effects, try a 1/4 pill. If that doesn't do anything, try a half pill. I hope the Mestinon helps you. It has made a difference for me, but unless my upcoming thymectomy is a smashing success, my running days are over. The loss of this, unlike the Mestinon, has been a hard pill to swallow.