[UncleBob]

First of all I would like to say hello to everyone and thank you for your time and input on these health issues that everyone seem to have these days.

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

[Lara]

Hi UncleBob,
Welcome to the NeuroTalk Support Groups.

I just wanted to leave the link to our
Myasthenia Gravis Forum

I'm sure the members who post there can offer you some much needed support and information.

Take care of yourself.

[Kitt]

Welcome UncleBob.

[Sea Pines 50]

Hi, Bob. I'm glad to meet you, but sorry for the reasons why you're here on NT. Don't know much about MG or the specific med your neuro has prescribed for you, but my suggestion would be that you consult with your pharmacist about your concerns. A good pharmacist (Ph.D.) often knows a good deal more than does the prescribing physician about these meds and their unpleasant and downright alarming side effects, and could be a terrific resource for you. S/he will be able to tell you, for example:

~ whether or not the side effects will diminish over time if you elect to stay on the med, due to your body becoming acclimated to it;
~ if there are alternative meds out there which could serve the same purpose but with fewer or lesser side effects;
~ how the med might be interacting with any other prescribed meds you may be on;
~ does the starting dose as prescribed by your neuro seem reasonable, etc.

The other plus to this approach, of course, is that pharmacists are more available and accessible to patients than their docs - especially on weekends and holidays.

That's all I have, for now. Wishing you the best of luck with everything and I hope you keep posting to let us know how you're doing.

Bob's your uncle!

Alison

[Darlene]

UncleBob,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene