I had a anterior mediastinal mature cystic teratoma removed with lower 2/3 of the thymus excised when I was 14. Doctors now call it a Thymoma? People ask if I have been in remission since 1985 when I had this surgery? No I don't think so. I don't think I had MG before this surgery. I think MG developed sometime afterwards from having my Thymus removed but I chalked it up to not having an immune system and always getting sick. It wasn't until the year of 2010 when things started to happen that I could tell something was really going wrong. It has been up and down with strange things but when I had a major surgery Dec 2011 it kicked in the MG for sure, voice loss, breathing issues for 4 months straight. All kinds of specialist & test and no one could diagnose until a Neuro was put on the team in Nov of 2012. I am double sero negative but at that time generalized symptoms shoulders, arms, hips, upper legs, neck, double vision, blurry vision, raspy voice or complete voice loss and sometimes breathing issues. Starting on 60mg cut in half. Then moved to 3 60 mg a day which worked great for months. I was coming off of prednisone due to it causing Cushings Syndrome, I had been on a small dose of 5 mg every day for past year and when in hospital much higher doses. So coming off prednisone and taking the mestinon, I started to feel better Then summer came some emotional stress addedand when I seen my Neuro in Sept I had bi-lateral Ptosis, facial droop and fish like mouth...MG had now taken over my face. My swallowing was being effected, speech was slow, thinking was slow, walking, everything. She added timespan 180mg at 5pm. Well this felt great, eyes perked right up! Could smile. Then I am not sure what happened but I started to wake up choking at night for about a weeks time. So I would take a 60mg. I called my Neuro's office told them I need to come in or need a sooner appt. They told me go to ER. Go to ER, they treat me as if I have asthma? Couple of breathing treatments, benedryll and sent home. Continue with a duoneb treatments and benedryll for two weeks. I am getting weaker and weaker. Have I mentioned since stopping the prednisone I did recover from Cushings while I was feeling good I was swimming and had went from 280 down to 220. Then from being sick laying in bed I am now down to 160. So Dec 17 I finally see my Neuro and she is shocked. Now I had called, emailed telling them I need to see her but I don't think those messages get through. She seemed very concerned, she sees I am not stable FINALLY... She adds another timespan in the morning so that is 3 60mg and 2 timespan 180mg and says come back in 6days. 2 days before Christmas. I come back in the morning and because I still look horrible she adds another timespan now up to 3 a day and come back in 2 weeks. Still don't look good or past test, still week so now I am at

6:30am 60mg 7am 180mg 12pm 180mg 5pm 180mg 10pm 180mg and can take 30mg inbetween if needed.

Does anyone take this much Mestinon? I am feeling better so maybe it is just to pull me out of whatever is going on.I have never heard her mention IVIG or Plex. and maybe those are not options for me due to my high allergy problems or being seronegative. Plus I have many other Neurological problems so I really don't know, I am confused. I have an appointment for a second opinion but I do not want to upset my Neuro because I do like her and from what I read they are hard to find one you like. I am weak and tired and the thought of starting this process all over again with a whole team of doctors really isn't what I want to do. I need to get back to a somewhat decent place again of strength, I have my 8yr old to take care of. Any suggestions or thoughts?

I take timespan when I go to bed - about 10:00 pm. When I was having lots of problems, my neuro recommended adding timespan in the morning also to try and even out the mestinon. I continued to take 60 mg every 4 hours during the day. It helped a little for a while, but I started going downhill again and that is when I started a trial of Cytoxan infusions for a year.

I guess my point is that you can take timespan more than just a bedtime. However, if that doesn't work, there are other options you can try. You do seem to be on a lot of mestinon, but some people have no problem with taking that amount. I can't because it messes up my gi tract and I have a lot of cramping, diarrhea, etc. I also use IVIG bi-weekly and that really helps. Here's hoping you find a combination that works for you.

Juanita

Right now I take 90 mg of mestinon 4 times a day and 180 at 10 pm before bed. If i have a bad day, I take 120, 4 times a day and 180 at night. I had the episodes when I stop breathing at night and wake up choking and gasping for air. I have not had it again since mt last IVIG, done for breathing issues. I am going for a sleep study, the pulmonologist thinks I need a c-pap to help me breathe at night.

Are you on an immunosuppresant? I take cellcept and have found a general improvement in my MG.

Try going to a neuromuscular specialist at a large teaching hospital. They generally treat more aggressively and with more than just mestinon.

hope you feel better
kathie

Hi Kathie - No, I am not on an immunosuppresant. She wanted to put me back on a low dose of prednisone for 1 month 10mg every other day. I told her the Endocrinologist said no prednisone unless I am in the hospital hooked to an IV and it is for life saving purposes. (I think I am pretty close to that right now)

I know there are other options if I am to be placed on an immunosuppresant right? I guess I am a bit confused. I thought if you had your thymus removed that put you in the category as having your immune system suppressed? So why would you need to take more drugs to do that? I wish I felt better when I see her and we weren't always dealing with so many things. She spends an hour sometimes longer and I still do not have these basic questions answered.

My understanding about thymus removal is that it has nothing to do with suppressing your immune system. I was puzzled about why removing the thymus didn't automatically stop our bodies from producing the T cells that are causing the problems in the muscle/nerve juncture and send us into remission. She explained it (very simplistically) to me as follows: for some currently unknown reason, our bodies decide the receptors on the muscles are foreign bodies and must be destroyed; so it wakes up our thymus gland and tells it to work on some T cells (which our bodies create all the time and use for many useful things) to destroy the muscle receptors. The thymus is like a school that educates the T cells to do this particular job and attack the muscle receptors. When our thymus is removed, our body says "Hmm, well I have these particular T cells and I must need them since they are running around in my body, so it continues to manufacture that particular T cell along with all the others it produces."

Of course it can't be that simple, because this is mg we are talking about. For some people, it does put the body into remission. For some, it doesn't seem to make any difference at all and for some there is a kind of middle ground where you get some benefit, but not remission.

Hope this helps a little with understanding why removing the thymus doesn't really have anything to do with our having immune system suppressed. That is a separate issue and most of us with mg have to be on long term immune suppression. For most of us, that means Cellcept or Imuran. There are others, but these two seem to have the most benefit with the lowest amount of side affects for most people.

A lot of us are also on IVIG to support our bodies and of course you have to throw prednisone into the mix, but that is usually started at fairly high doses when we are in crisis and it takes a long time to wean ourselves off of it.

Hope this helps give you little better understanding of a small portion of mg.

Good luck and hope you find what works for you.