Hi all,
Well, I have two full diagnoses and one probable diagnosis. My rheum diagnosed me yesterday with undifferentiated connective tissue disease (UCTD) and Fibromyalgia. YEA!, what a combo. On top of that, my neuro is starting me on a med trial for MG. I have had antibodies come back positive and my thymus is enlarged. My forearm SF EMG was negative, of course. So now we are starting Mestinon as a trial.
She is starting me on 30 mg twice daily. Now, according to the drug manuals that is the lowest starting dose. But from what I have read, most MGers need to have it at least every 6 hours. This initial dose seems really low.
My question is how am I supposed to have an effective trial if I am on such a low dose? I am also concerned that if/when I need to increase, I am going to have a buy a new script and I see this going on and on. Any suggestions?
Also, is it common to not see your neurologist for 3 months after starting a trial?
Any help would be appreciated. Hope you all are well and strong today!

Well, when I started on Mestinon it was in liquid form cuz' I was too weak to swallow pills, but I was also given 30 mgs - 3 X a day. Maybe it was b/c I was so weak, but I did feel it within 20-30 min (at that point I was too weak to even chew or swallow ice).........After about 30 min I was able to chew/swallow ice. I actually cried!

I am so sorry to hear you are going through this....do you have a support group? Are you feeling OK today?

One thing to remember with Mestinon is to take it after you have eaten a bit. You may have tummy problems if you don't - learned that the HARD way!

Hang in there and let us know if you need anything!

Erin

Wow - sorry about all the whammies you're getting! But, my new mantra is knowlege is power - can't get proper treatment without proper diagnosis.

I personally think a 3 month follow up is a long time when doing a trial. Did they tell you to call when you have an idea of how it works? I would even if they didn't tell you to.

I can feel the effects of the Mestinon within 20-30 minutes. I am on 60mg, kind of being allowed to dose myself according to how I feel, but I have had experience with MG and know which of my symptoms are it and which may be my other condition.

I'm sorry, I didn't check on what weaknesses you are experiencing, so don't know different ways you can test yourself. I have generalized MG so when in need of Mestinon I CAN'T stand up out of a chair without using my hands. I also will start into shallow breathing and feeling foggy headed.

After Mestinon I can get out of the chair, my breathing is more regular and my head starts to clear up within 20-30 minutes. How much I have to take depends on just HOW weak I am. I have need another dose within 2 hrs. or sometimes can go as long as 6 hrs.

If you do feel some relief of your symptoms after the 1st dose (may be less dramatic at 30mgs) then they get worse again before the next dose, then improve even a bit again after the next dose I would call your doctor with those results and see what they say about adjusting it.

Good Luck, Barbara. It is at least good to have answers so you can plan, prepare, and research on your own what may work best for you!