I just want to ask if there are other people out there having other problems that aren't not necessarily weakness? For example, I am having tinnitus and hyperacusis problems for a couple of weaks. I feel like my memory is shot (I couldn't remember a pets name we had a couple of years ago that passed away, and yesterday it took me forever to recall the names of my cousins). These are just two examples but I feel like my memory and mental focus is not good right now. Tremors. I get these when I stretch and in the morning when I wake up (I have not felt fully rested in a couple of months even with sleeping 8 hours) and lift my head off of the bed, my neck muscles feel strained and I can feel them trembling. I was doing the dishes last night and my legs (thighs and calves) felt like they were trembling too. If I rest, it's ok, but I feel like I am not responding well to the medicine because the weakness and fatigue is really getting to me. When I drive, my right foot feels weak from constantly braking and pushing the gas. My hands feel like they are slow to grip and turn the wheel. I feel like my movements are a lot slower than what my brain wants them to do when i reach for things or try to do other tasks. Also, fluctuating balance issues. I follow up with my Neuro in two weeks.

I am seronegative, so I guess that there is some chance that my diagnosis is wrong. However, you sound just like me. Mestinon does help but I still have a lot of problems.

I have all the classic MG symptoms, weakness relieved by rest, chewing problems, swallowing problems, double vision, ptsosis. But I also have other symptoms that are not classic but I have found some explanation for them. I have the chronic tininitis that never goes away in 2 years (relieved for 24hrs on 5th day of IVIG) and hyperacusis. I have found several other MGers complaining about this and some explained that there are small muscles in the ear regulating pressure which could account for the symptoms.

On bad MG days my memory and attention span is shot. I just figure I am concentrating so hard to walk or swallow that my brain cannot handle anything else.

I get the muscle fascilation and trembling when the mestinon starts wearing off particularly in the morning and it is intiated by the smallest movement. If I get up and take more mestinon they subside. I get them during the day as the mestinon wears off too but not as bad, since I am only 4 hr from a dose instead or 8 or more hours at night. i also break out in profuse sweats as the mestinon wears off. This is relieved also by taking more mestinon. I attribute both these symptoms to the extreme weakness due to mestinon wearing off. It is like the feeling you get before you pass out, when you break out in a profuse sweat and all your muscles tremble with weakness.

I also have dizziness and vertigo and chronic diarrhea that waxes and wanes with the MG.

My hands and feet are so clumbsy due to weakness. My left side particularly is useless. I am a mess in the kitchen. I knock everything over and break things. I cannot flip an egg or a pancake. I cannot even count the number of times I spent making dinner and it ended up on the floor. My body does not move in the way I instruct it to with disasterous results. I have had several fall. And a couple of times when my legs would not move at all, one of them was while driving before mestinon. I have to schedule my entire day and activities around my mestinon schedule so I do activity when I am strongest. I take mestinon 1 hr before leaving in the morning for work and before returning home so I am strong enough to drive.

I think all the symptoms are MG related. Mestinon only works 3 hrs for me. I am going to ask my neuro to take the same dose every 3 hr so I do not get so many ups and down and have a more constant level.

Good luck with your neuro appointment
kathie

Thank you both. This entire thing has been very depressing for me. Just 6 months ago I was playing softball, volleyball, kickball, and working out. My fiance always wants to go and do things (go hang out with friends, go to the movies, etc.) and I'm just do dang tired. We've been together for over 6 years now and I have never been this out of it and I don't think she understands because to the eye, I look ok with the exception of dark cirlces under my eyes. I feel like a bum. My sex drive is horrible now too. I'm just down in the dumps. I don't feel sorry for myself, I'm just tired. I am really thinking about asking for IVIG or Plasmapheresis at my next appt. with my Neuro. My reasoning is I want to to treat the MG to see if other symptoms are still there. Thanks again guys, it's been a heck of a couple of months for me. I don't have too many people to talk to that understand this problem.

I have experienced many, but not all, of the same issues and have had improvement in severity of issues following IVIG and likewise have observed deterioration in condition as IVIG starts weating off or as i do too much. No doubt there is delicate balance.

Although they say MG doesnt have cogniitve impact, i have also observed that i have trouble with memory, recall, etc especially noticeable when weak and have concluded, at least for me, it is related to the overall weakness.

I take 60 mg every one to one and half hours (12 per day) plus the 180 at night. I started every 6 hours and with doctor advice increased to the current dosing over about 5/6 months

I am aware that is more frequently than anyone else i know of and have had others question that frequency but it works for me.

strizzlow, are you on any meds besides mestinon? Pregnisone gave me great fast relief while waiting for IVIG approval. I would not want to be on it longterm but it was a quick fix for me. I had a bad reaction to IVIG and they upped my pregnisone again and I am feeling better. I am insisting on a thymectomy at my next neuro appointment in 3 weeks. 30% get remission and almost everyone else sees improvement. I am also going to ask for plasmapharesis while waiting to schedule the surgery and to take mestinon every 3 hrs. My MG continues to deteriorate at an alarming rate and the heat of the summer is making it worse. It has me very down too. Try to stay cool, it helps abate the symptoms a lot. Pregnisone also helped improve my mood and appetite,

let us know how you make out
kathie

I take 60 mg of mestinon twice a day and 20 mg of Prednisone. I've been doing this for several weeks now. I don't see a great improvement to be honest. The mestinon helps with the fatigue in my opinion, but it's not significant for the weakness. I had a CT scan of my Thymus several years ago when I was diagnosed and it was ok. That's something my doc may want to check, I don't know.

Your meds seems a bit low to me. Mestinon dose vary a lot. But it seems most MGers take 60mg, 3 or 4 times a day and many take the time released at night. It seems most MGers also start on a 40 or 60 mg of pregnisone and then wean off or down to the lowest effective level.

I take 60 mg of mestinon 3 or 4 times a day and 180 at night. I stated on 40 mg of pregnisone and within 3 days, had more stamina and relief from MG symptoms. I was sleeping 16 hrs before pregnisone and then was sleeping only 10. I felt like a new person. It made me say to myself, I can handle this disease if I can keep feeling like this. When they weaned me down and I reached 25mg, all the MG symptoms broke through. So they upped it back to 30 until the next neuro visit and we figure out where to go from here.

If I were you I would do more research on the thymectomy. Most MGer do not show a thymoma or nodule, but when they operate they find hyperplasia (abnormal high activity) and symptoms abate after surgery. i have read many MGers stories were their CT of the thymus was normal but after surgery they found hyperplasia and a few even a thymoma. I would discuss it with your doctor.

http://emedicine.medscape.com/article/1171206-overview
http://www.ncbi.nlm.nih.gov/pmc/arti...00197-0089.pdf
http://www.ncbi.nlm.nih.gov/pubmed/8888243

kathie

Okay, I will do that. I heard that after 3-5 years symptoms typically don't get any worse, but I don't know how true that is. I past the 5 year mark and my symptoms always remained, they were just mild, and just recently started having different issues. If they continue to progress, and a thymectomy is something my doctor recommends, I think I need to have it done sooner than later since I'm only 27. Thanks again for the info.

Stizzlow,

The only thing I can add is you will need a MRI in addition to the CT scan to see the complete picture if you do have an thymoma. That's what I had to go through before I had my thymectomy.

Hope you can find all the answers you need.

Southern Bell