Kendra,

I don't have any advice regarding the mestinon since I'm one of the lucky ones without any side effects. But I wanted to wish you luck on your second try. When it works, it's so wonderful! I feel like I have a new set of lungs when I'm on it (I can still totally wear myself out though lol).

Ally

Ally,
Thank you for wishing me luck!!! It has been so nice to hear how many people on Mestinon only and have had good results. My Neuro told me today to start again with 30 mg 3 x a day. If I am doing ok with that after 3-5 days he said to go up to 45 mg 3 x a day. He said he doesn't want me to go above that due to the side effects I had. So far so good today! I am hoping I can work up to 45mg and tolerate it. maybe then he will decide it is ok to try 60 mg at a time in a couple of weeks. I have been making sure to drink plenty of water each time and I really think that may be helping. I should know more by tomorrow night after I've had several doses.
Kendra

Yay! I'll be crossing my fingers for you.


I started out at 30 and worked my way up too. Not to put too fine a point on it but I thought I'd be tossing my cookies left and right since that's what I usually do with meds but I was fine! Of course they took it away from me when I couldn't get a diagnosis.

I have a lot of hope this will work for you!

Ally

Kendra,

That's great news!! You'll feel so much better in just a short time!

Sue

Ally,
I am so sorry to hear they took your meds away! My gosh how awful to have them help and then have them taken away. What tests did you have done to test for MG?

Sue,
So far so good! Day 2 and still no problems. I am hopeful!!!! I can't wait to start feeling better.
Kendra

Hi Kendra,

I actually had two positive Achr antibody tests (positive for binding) at the Mayo last year. Still, the mayo doc said I didn't have mg and then I couldn't convince any of the neuros here in the northwest that I have it. Sounds strange, but the fact that a positive diagnosis can be based on the antibody test doesn't seem to be at all known out here. I ended up emailing an mg super-specialist on the east coast and he recommend a neuro in California who I waited 7 months to see - he finally diagnosed me a couple of weeks ago. Still, like you I have to go through some pulmonary tests and emg and nerve tests before I can get my beloved mestinon back. All that is scheduled in November, so I'm just trying to struggle through until then. In the meantime I live in fear of having the diagnosis taken away.

Part of the problem (besides ignorance of the disease on the part of the neuros in my opinion) has been that I always pass the keep-you-arms-up test with flying colors. It's mostly breathing with me, although I also have an eye droop and sometimes facial weakness so bad I look like I've had a terrible stroke. Also, my triceps give out and my hands get very weak. Right now I can't hold up a magazine, and I'm having a hard time typing this. It hurts and I'm weak, but not so weak that I couldn't squeeze a neuro's hand. That's what I just don't get. Maybe I have a weird variant of the disease. I'm also naturally strong, really muscular.

Thanks for asking! I hope all's still well on the mestinon front for you! Hey, have one for me.

Ally

Hi Ally,
What a nightmare. I am glad you have your diagnosis back and I know the Mestinon cannot come soon enough!!! It seems like everything takes sooo long. Hopefully with this new neuro you don't have to worry about having the diagnosis taken away.

I like you have very strong arms too. The first neuro told me mine was ocular only but then the new neuro told me it is generalized due to arm weakness and occasional swallowing issues. I knew the first neuro was wrong and even told my husband that my arms have always been strong. Try to hang in there until Nov. I know it's hard but hopefully you'll be on meds again soon!!!
Take care
Kendra

Kendra,

I'm just dying to ask you: when the second neuro said you have arm weakness, did it show up in the neuro exam? Did you have trouble holding your arms up for 30 seconds? Or was it that you reported to him that your arms were weak? Thanks!!

Ally

Hi Ally,
No it didn't show up in my neuro exam that I'm aware of. He was asking me if the first symptom was the ptosis and I told him looking back it was a weakness in my arms that had started around the first of this year. He asked me to explain what it felt like and I told him I had been waking up for months with a weak feeling in my left arm and that when I was trying to blow dry my hair or put dishes on a shelf above my head my arms got so tired and heavy feeling. I also told him I felt like I had become clumsy too because every once in a while I would drop things for no reason whatsoever. He did alot of tests on my arms but I don't think he did the one where you hold your arms out for 30 seconds. The neuro that did my EMG said she thought there was some weakness in my left leg but I didn't mention that to him because I have only had one time I noticed it and that was while I was walking dogs. Hope this helps!
Kendra

Thank you so much! That is exactly how my weakness feels. That makes me feel much better.

Ally