When I was put on mestinnon in the hosp during a myasthenic crisis it was 60mg x3 daily. I ended up back in the hosp about 4 days later because I was trying to do basic things at home. I hadnt retruned to work yet and had tried a quik trip to the groc store but fell twice so had to go home without buying anything.
At the second visit it was because my breathing had worsened as I ttried to to do a few of these things. The put me on 75mg x 3 and let me go home. I could feel the increased strength. But a couple days later I had gone to Walgreens and was excited that my body was doing so much better yet when I went to check out my mouth had this locked up thing that slurrred my speech. I was also having strong bouts of twitching in my diaphagm when I would sneeze or yawn or lay down. I called the neuro after the slurred speech. He said back to 6omg. But at 60mg I couldnt return to my partitme job so I lost my job. It works better for my breathing than my legs and such. But only in the context of limited activity.

During the winter I get better from the cold and my body starts acting like it needs less mestinon so I had to take less in the winter.
Annie59

I've found that since staring Mestinon only a week ago I am able to get more done with less difficulty. The doctor has started me on a small dose (30mg 4x daily), no real side effects to speak of either. Just being able to walk up steps in an almost normal fashion has been a great improvement in itself!! I have a bit more stamina as well.

Make sure you speak to your neuro about any problems you think you may be having, no matter how big or small. Together both of you will figure out what dose works best for your activity levels and the needs of your body to make things easier.

Hope you get everything figured out,
Rachel

Sorry about my delay in getting back here. I do appreciate all of your help.

Poetist~I'm sorry about your reaction to Mestinon; that must have been scary! I'm glad you can tolerate it now. I know I need to really try hard and stick it out with this because I do think it is helping me some even at this low dose.

Tresa~ I'm sorry you had a hard time with Mestinon at first too. It sounds like you have a good schedule worked out for yourself. I have been taking 15 mg three times a day. I want to go up to 30 mg for one dose a week until I'm up to 90mg total per day, then I'll ramp up to a higher dose. It helps to see what others have done. I'm wondering if the 15 mg dose can really be helping me at all? What do you think? Oh, where is the chat room?Thanks for your input.

AnnieB3~I can really see how several different things can affect me, each stressor adding another layer causing me to get closer to a crash. Talking does wear me out, having visitors can wear me out. People, of course, don't really get this. I sort of feel like I'm uncoordinated because I can't eat, talk and breath at the same time. It almost always affects my breathing. I've had EMG's and all of the blood work done, so far nothing has shown up. I've been tested out the wazoo for everything else. My Ophthalmologist suspected MG based on my Ptosis and other symptoms that I described to her. She referred me to a neuro as she wanted me on a trial of Mestinon. My appointment got pushed back though and when I saw my new PCP he felt as if I should be started on the Mestinon now. That's probably more than you wanted to know, but it's where I am now. Thanks for your help.

Abby~I can relate to just about everything you said. I'm a very social person (at least I used to be) and I talk a lot. It's so draining now. It's interesting to hear you say that you can tell when you've not taken the Mestinon. I hope it helps me enough that I can get to that point. I take Neurontin for Neuropathy and I can really tell when I need a dose of it. Thanks for taking the time to reply.

I'll get back here tonight or tomorrow to reply to everyone else. Thanks again for all of your help. I really feel like I'm learning a lot here.

Shalynn, I don't mind an entire page of information! I think anything we talk about helps. For example, the fact that you are taking Neurontin for a neuropathy speaks volumes.

Did you know that Neurontin can make MG worse and, in some cases, has brought on MG?

http://www.ncbi.nlm.nih.gov/pubmed/12855353

http://www.ncbi.nlm.nih.gov/pubmed/10918256

I'm sorry if I can't recall this but have you had your B12 checked? If not, get it done! Did they ever give you a cause for the neuropathy or just throw a drug at you?

15 mg. is a low dose of Mestinon. Are you sensitive to meds?

I think you need more answers than you are getting. Throwing a drug at a problem is the "cheap" and easy way to hurry a patient out of the clinic but it's not the BEST way.

Please be careful about doing too much because MG can get worse very quickly.

Annie

Rachel,

It sounds like we are both starting out low on the Mestinon and ramping up. I have been able to take 30 mg twice a day now without any problems. Today I'm going to take 30 mg three times. I think I'm sort of afraid to take the higher dose because I am seronegative. Even though I am responding well to the Mestinon it's hard for me to believe at times that this is what I really have. If you ever want to talk about how you are doing on the Mestinon just message me. Thanks!

Annie,

I had no idea that Neurontin could cause MG! I have had my B12 checked and it was normal. The doctors think my neuropathy is left over from an attack of Myelitis that I had six years ago.

The Neurontin/MG theory really could explain how I developed MG. The neuropathy came first, then the MG symptoms. I've only had the weakness and other typical MG symptoms for about two years.

I am suppose to be taking 60 mg three times a day, but I'm slowly ramping up the dose. I have been poked and prodded and tested for everything. I really do feel like MG is the correct diagnosis. Especially because I have responded so well to the Mestinon. My eye doctor really was the first doctor to diagnose me with it based on my ptosis.

Thanks for your info. I have given me a lot to think about.

Shalynn

PS...I'm having to learn my limitations all over again because the Mestinon makes me feel like I can do more, but when it wears off I can really feel it.