[UncleBob]

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

[juliejayne]

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.

[UncleBob]

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

[Juanitad]

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!

[StephC]

I am certainly not qualified to give medical advice but my own experience since diagnosis has been that I have multiple and some overlapping problems and it is taking a long time to identify and address all of them. For example you mentioned you stop breathing when you sleep...do you have CPAP? many MG have sleep apnea. I do and not having CPAP was absolutely making my other issues worse. It could be a long and very frustrating journey but this is a wonderful resource with many much more wonderful people than myself here to help

Stephaniue

[UncleBob]

Thank you all for the advise as well. I must admit that I was a little apprehensive about sharing my recent diagnosis of MG with you all because I have had some less than desirable results in the past with public forums. You have been very nice in your response and advise however, and in doing so, I have found a small measure of comfort in knowing that I am not alone.

Thank you all,
UncleBob

[southblues]

When I first started taking mestinon, I would have twitching in my tongue and mouth a lot. It scared me at first. It doesn't happen now. Sometimes it will make my bowels pretty spastic. When that occurs, I take imodium (with my doctor's blessing.)

Sorry to have to welcome you to our unhappy little club.

[suev]

Hi Bob - welcome!

When I first started taking Mestinon, I felt like I was drunk...and/or hung over. So, with my neuro support, I started taking a 1/2 tab (30 mg) every 4 hours. After quite a while, I went to a half tab every three hours, until finally I got the courage to try the whole tab...and it was fine. Been on 60 mg every 4 hours ever since. I have never been on timespan at night - not because there is anything wrong with it...I just don't need it.

And oh yes...in the beginning I had lots of twitches too. Drove me crazy! But that rarely happens now.

Always be sure to have something on your stomach when you take Mestinon (whatever the dose!) Mestinon does have nausea as a side effect - but having food on your stomach helps A LOT.

I hope you find the right adjustment by working with your neuro (yes they are all notoriously difficult to work with).

Are you by any chance taking prednisone as well? Pred and Mestinon is more powerful than Mestinon alone.

[UncleBob]

I have decided to give this Mestinon another day in court. I have split the 60mg tablet in half and going with 30mg 4 times a day. I will not take the 180mg (timespan) because you cannot split those according to instructions.

An interesting note: My neurologist still has not returned my messages so I will take personal responsibility in making these medication adjustments in hopes that some progress will be achieved.

Thank you once again for your suggestions and sharing your experiences with me. I will try to post my results in the event that someone else may be going through the same frustration.

UncleBob

[UncleBob]

I have read some of the issues with mixing the pred. with the mestinon and that is a good question but no I am not. You all seem very sincere in your comments and questions so I will give you a quick summery of where I am at with my health situation.

When I was in the 7th grade I played football. I would break out in a very bad rash when I would sweat and it itched like poison oak but would go away after a shower. I assumed grass allergy but after he made me see an allergist I learned that I had Cholinergic urticaria. This carried over into my adult life and progressed at times making my decision to become a Computer Technician a tactical one as computers need to be temperature regulated. Well I excelled in that career and 25 years later after eating a whole lot of fast food and donuts sitting on my butt all day I reached a weight of 400 lbs.

I developed re-curing abscesses around my groin area and due to embarrassment of going into the ER I read up on how to lance and care for them myself. After years of this I finally had to go see a doctor because of the increased level of pain and the severity of golf ball size abscesses. My doctor diagnosed me with severe Hidradenitis suppurativa and prescribed me Oxycodone for the pain. For obvious reasons I was also diagnosed with Type 2 diabetes.

Now in painting this picture I would like you to know although I have struggled with Severe Itching Rash and Severe Pain in my groin I have managed to lose over 100 pounds working out and using the treadmill with diet changes of course. (little pat on the back there)...

So here we are now and you can imagine my joy when I just start feeling SOOOoooo weak All the time and can't explain why I am waking up in the morning with my whole body numb feeling like I just came off a 20 mile run. and when My right eye starts drooping and I can't hold it open I am thinking Stroke. Well you all know the story after that so please give me a little slack if I tend to seem a little bitter at tines. I may be down but don't count me out! I WILL WIN THIS TOO!

So in Summary suev, I am on diabetes meds, hydroxazine, oxycodone 30mg x4 a day and now Mestinon.

UncleBob