Annie,
Thanks for the long reply and so much info.
I am waiting on an MG specialist... I have an appointment on December 2. I finally got the appointment and the referral.
The problem I am facing is that my family doctor doesn't know anything about Myasthenia Gravis. He said he has had one patient and in his words "he lived to be 93 and died from heart issues." I was originally referred to the Neurologist for ADHD, but MG hit me a few weeks before my appointment. So when I got to my Neuro, he just continued misdiagnosing my double vision and BOTH eyelid droop (one at a time) as multiple cranial nerve palsies. During 2 examinations, he said I definitely had the palsies and even after I googled "alternate eyelid drooping" and it kept only coming up with MG results, he laughed at me and said I did not have it. I suffer from anxiety and eventually went into "insanity Google mode" where despite my vision being doubled horizontally and vertically, I spent all day and night Googling MG. Finally, my neuro scheduled the MG blood test "to put my mind at ease." There is only one company that does this test, so the results took over 3 weeks. When I went back to the Neuro, he apologized and said I tested positive. By then, I was having issues with my tongue and shortly after, it spread to my swallowing muscles, neck, face and chin muscles, shoulders, arms and now my hands are extremely sore and weak, but I don't know if MG can do that. That Neuro gave me a referral to another MG specialist, but I couldn't get an appointment until the end of December, so I had my family doctor give me a referral for what I believe is a better doctor and hospital in Philadelphia. This current Neuro said he wouldn't give me other meds "due to possible side effects," but he gave me Prednisone. I started at 10mg for 1 week and then 20mg since. I have been taking this dosage for a month now. I feel NO improvements, in fact, my vision blurriness is insane now. I have to go right up on anything to read and I had 20/20 vision. I don't know if it's the MG progression or the medications. I ended up going to the family doctor who questioned why the Neuro didn't give me Mestonin, so he did. He only gave me a prescription for 60mg reg pills, twice a day. But after arguing with him for a few weeks and bringing the brochure on dosing to his office, I now have the 180mg extended twice a day and 60mg reg twice a day. The only relief I get from it is a slight improvement swallowing and talking. But I still have issues eating any solid food and if I talk a few minutes, I have problems... medicine or not.
Right now, I'm supposed to go back to this Neuro tomorrow, where I will bring in Prednisone dosing info for MG and hope he ups the dosage. I count each day until I can get to the specialist!!!
And as far as the gym, they froze my membership. I still pay, but they said they'd add the months back on at the end. But right now, I can barely lift 10lb dumbbells above my head. I have lost almost all of my strength and it's 24/7. None of my symptoms seem to get better during the day, they just get worse as I work too much. I have to learn how to relax and I have to learn how to rest. My entire life is turned upside down and I can't be running 1000 mph anymore, but as of now I am still working myself from about 5am to 6pm a night. I am self-employed and it's a lot of computer work, but also retail and moving boxes, etc. I would give ANYTHING to have normal vision again. The swallowing and vision are the issues that scare me the most.
Quote:
Originally Posted by AnnieB3
Hi, Jerzy Boy. Welcome.
You know how when you get stressed about something and get tense? You need to practice relaxing your muscles throughout the day. You might not even know that you are tensing up your swallowing/neck/head muscles. After a while, you get used to being in a relaxed mode all day to try to avoid getting too weak. By tensing up, you are making muscles weaker. 
Then don't lie on your back or stomach!  MG tells you what it can or can't do, so roll with the punches.
I sure can't do either. I always sleep on my side, propped up with two pillows (Homedics pillow from HSN, since it supports my head well). You could even try a neck brace to support your head and neck muscles throughout the day. Even a U-shaped pillow can take the tension off of those muscles while sitting. I like the buckwheat hull pillows because they're cool and not rock hard like some are.
I have similar questions about the steroids. When did you start and how soon afterward did you feel worse? Did they advise you on taking good prostaglandins while on that anti-prostaglandin drug (i.e., fish/olive/flax oil, etc.)?! Did they recommend that you take vitamin D and calcium while on it? Any advice?
Other things that can make you weaker are electrolyte imbalances, thyroid conditions, and a B12 deficiency. Make sure that they aren't missing something. Many of us have more than one thing going on.
Mestinon Timespan doesn't last more than 12 hours. That doctor needs to read up on it.
A Mestinon tablet or syrup usually kick in after about 30 minutes. Two hours after that (2-1/2 hours after taking it), it wears off. You get about two good hours of use.
The symptoms of too much and not enough are very similar, so you have to go by how you feel when it wears off (partly). If you feel worse after taking it, you might be taking too much. If you feel stronger, then it's working.
Side effects like increased salivation can go away after initial use. How long have you been taking it?
Ditto on what 4-eyes said. NEVER take a train to get any care. Have your doctor write out what's wrong and what to do if you get worse. They can always transfer you via an ambulance if need be. That's invaluable. Even oxygen will help you on route to getting more help.
You really need to have a conversation with someone soon about your condition, even if over the phone. Call your neuro's nurse and discuss this—in the morning when your swallow is better.
Until you get to know MG better, SLOW DOWN. Ditto on the no gym thing. You're not normal anymore, so your lifestyle needs to reflect that. It's really hard to get used to any disease, but MG is very tricky. It's not only "the more you do the worse you get." MG can have a cumulative effect and it can make you suddenly weak if you push too far. So give yourself some time to get used to living with it, learning as much as you can, and stabilizing it with a better treatment. Even so, one of the best treatments for MG is balancing activity with rest.
I know this suck. We all do. But MG is not as benign as a common cold. It can kill us. You can get through this and be okay, but not without some modifications to your life. And asking for help when you need it.
Take it easy and call the neuro's office.
Annie |