My name is Robert Horne and I am from Oakland, Oregon USA. I have other health issues that have allowed my disability SSDI for a period of 2 years in which my doctors were to resolve my major problems and return me as a productive member to society. On Sept. 26th 2014 I was officially diagnosed with Myasthenia Gravis. After reading very little about this disease I am sure that I have had this for several years now.

After seeing the neurologist and being told that I definitely have this incurable disease, I was prescribed Mestinon 60mg 4 times a day and Mestinon 180mg (timespan) at bedtime. Now, from the research I have done online that seems like a (break-neck) introduction to such a nasty drug with known horrible overdose side effects. My question to you is... Should I question my neurologists ability to treat me at this point or is this not an unusual First Dose for a 6' 2" male at 46 and 290 lbs.? Within 24 hrs. I was twitching, cramping, lost continence, puked 4 times, had pixilated vision, could not walk and felt as though I had food poisoning. I started this med. on Sat. and of course doc office closed Sun. so I stopped taking it Sun. Called Doc office on Mon. to speak to a nurse that told me to do it again!
Now I was born at night... but not LAST NIGHT! I told her #@%& THAT!
Today is Thur. morning still no call from the doc and I feel worse than I ever have.

I am embarrassed to admit it being a man... but I'm scared as hell!! I know very little about this MG and everyone around me acts like it's no big deal. My right eye is almost shut and wanders off on me... I can barely walk... I stop breathing in my sleep... when I can sleep... and I just got a letter from SSDI saying my benefits will end Jan. 1st 2015! Right about the time I get good and dependent on these new expensive drugs.

Hope you have a better day Than Mine,
UncleBob

P.S. Sorry if I come off like Lewis Black
or Bobscratch-Goldfart

Hi Bob,

You sound like this was not a good introduction to MG or to Mestinon. I don't know of course, but it might be that the Neuro was blaming some of your existing problems on MG. That may or may not be the case. You certainly need to go back to the Neuro and explain how you reacted.

If the twitching, cramping, and especially not breathing at night is a result of MG or of Mestinon, then you probably ought to be in hospital until you can be stabilised.

Overdose of Mestinon can cause the same symptoms as MG itself. Your neuro said that you definitely have MG. Did he/she explain what made the diagnosis so certain? It could be important to you.

In the meantime get back to see your Neuro ASAP. If your breathing deteriorates, call the hospital. If things settle and you are up for it, try 30mg to see if that makes you better or worse. Document the effects, it might help your Neuro.

Good Luck, and remember that there are plenty of people here with more experience, if you need any more questions answered. But this disease affects each patient differently.

Hello JulieJayne,

Thank you for your comments on my post. Well to answer your question, I was given a blood test and told that I have a positive result for MG antibodies.

I'm not sure what you meant by "it might be that the Neuro was blaming some of your existing problems on MG." but there is no doubt at this point that I have MG. My doctor did however make the comment while writing my prescription that I may need a larger dose of Mestinon but he would adjust it as needed. My gosh that initial dose almost hospitalized me. I am a pretty big guy and I get that kind of thing quite often but although I may look like a defensive lineman, this MG has reduced my strength to that of a little old man.

I guess I just don't understand why they would give you a medication that makes you feel worse than you originally felt to help you. Would you take an aspirin for a headache if it made your headache worse for a month before you had any relief? Reminds me of the old west when you went into the doctor for a migraine and the doctor says "Oh, you need an ear nail... or a donkey kickin".

By the way... I know that I tend to vent a little on here but I really am very polite and passive in person. Some even say to passive in certain situations.

Thank you for your response juliejayne,
UncleBob

My neuro lets me adjust the mestinon as needed - of course, that wasn't right after I started on the med. As Julie said, too much mestinon can mimic the symptoms of mg to a greater degree. As she suggested, it might just be too large a dose for your body. The best thing would be to discuss it with your neuro, but if you can't get a callback, you might try the 30 mg as she suggested and see how you react to it. Mestinon does not linger long in your system, about 4 hours max. So if you do have a reaction, just don't take the second dose and you should be back to normal in about 3-4 hours. Of course, I'm not a doctor and would never presume to advise you. This is a suggestion if you need some help and can't get a call from your doc. If you can't breathe, you should be in the hospital until they get you regulated.

Good luck!

Hi Bob,

You have certainly collected quite a list of problems there.

If it was a single blood test then you are probably positive for AchR antibodies. The reason for my questioning it is simply that MG can come in a variety of flavours, and the treatment for each variant can vary. Heck the treatment for each patient can and does vary.

What I was concerned about was that the Neuro might be blaming MG for some of the symptoms that your other conditions are responsible for. In which case he might be over-reacting. For instance the Both of these could be due to MG, but could also be due to other conditions. Are these new symptoms or old ones?

Let us know how you get on with a smaller dose... and get back in contact with your Neuro.

Bob, I am really sorry that you are having such a hard time. I hope things get better.

I would worry about taking prednisone with the diabetes. There are other immune suppression drugs you can take. I take cellcept. Some people take immuran.

Thanks for the input and concern. I will definitely question my neurologist about the adverse side effects should he suggest prednisone at any point in my treatment. I appreciate the heads up.

UncleBob

Bob, it might be a good idea for you to identify http://www.myasthenia.org/ a local chapter and a support group. Give them a call. They'll tell you which neurologists in your area actually specialize in MG.

Also make an appointment with a pulmonologist for a pulmonary function test and a sleep study. In the meantime invest in a $50 oximeter so you can monitor your O2 levels especially upon awakening. Keep a log of the readings for the pulmonologist.

Good wishes.

Bob, They think Hidradenitis suppurativa is autoimmune related against the sweat glands. I believe I have suffered a bit of this previously but was never diagnosed. I was afraid when they put me on prednisone, that is would get worse because of the immune suppression. Instead they all went a way and have not been a problem since. So I guess mine were autoimmune related. I have been on prednisone for 2 years and this was the only good side effect. They put me on prednisone for MG. I hate prednisone it has so many bad side effects. I also take mestinon and cellcept and a bunch of other meds to counter act the side effects of prednisone,

Prednisone should be a short term treatment for MG. Most neuro start you on another immunosuppressant too like cellcept and imuran. These take a long time to start working more than 6 months sometimes. Prednisone gives immediate relief until the others begin to work.
Good luck
kathie

Fantastic advice Steel... This is exactly the kind of input I am looking for. All 3 suggestions will be followed. They should have told me this at my appointment but I guess they all seemed a little preoccupied with ordering lunch.

A great help,
UncleBob