Gabe, excuse me for asking this if you've already posted it somewhere else. Brain fog has really got me tonight. Why 3 SFEMG's by 3 different doctors? Were all 3 negative? Positive? I can't even remember if you've been diagnosed MG or are in limboland.
Hugs,

Hi Lois... My diagnosis story is long and tedious but here goes:
In June of 2002 I had a hysterectomy - during the surgery they accidentally cauterized my ureter (tube from kidney to bladder) - I had 3 procedures and then reconstructive surgery to correct the problem in October of 2002. I never felt completely well following the reconstruction - and then started having trouble with my vision about six months later - had an MRI - had Optic Neuritis - was referred to a neurologist - my vision eventually improved and he repeated an MRI to rule out MS and sent me on my way. Then in May of 2003 I started having difficulty swallowing, having difficulty with speech - cleared my throat incessently and went to the primary doctor. I had also noticed that I was having difficulty on the stairs - my legs would get weak before I got to the top of a flight of stairs. My primary doctor tested me for Lymes Disease - test came back positive but then when they did the more specific tests they came back negative. She then tested me for MG - the binding AChR came back positive. She reffered me back to the neurologist - he repeated the blood tests and the binding and modulating came back positive. He is not an MG expert but prscribed Mestinon and started me on Prednisone - about 6 months later he added Imuran. He referred me to a specialist at the University for consultation regarding thymectomy. The "expert" said I had a classic case of Myasthenia and should schedule the thymectomy. He scheduled a SFEMG to measure the level of weakness...He did not tell me to go off my medication so I was taking Mestinon, Prednisone and Imuran. The SFEMG was normal. He then decided I needed to be off the Prednisone and did a fairly rapid taper - over the course of about 6 weeks I went from 40mg to nothing - I had the second SFEMG (a different doctor performed the test) about two days after stopping the Prednisone and had been off the Mestinon for about 12 hours. It was normal. He also did a muscle biopsy and it showed muscle atrophy which he attributed to Prednisone. He told me I was fine and that there was nothing wrong with me. I asked him to put that in writing, to stop billing under the Myasthenia Gravis code and to give me a referral to a Psychatrist...he referred me to Mayo Clinic for a 2nd opinion (really my 4th opinion). I checked into a hotel with my 4 sisters stopped taking the Mestinon ( I was off the Imuran and Prednisone for about six months by the time I got in to Mayo). I was off the Mestinon a little more than three days and had my third SFEMG and it showed a lot of abnormal jitter and blocking so I have a confirmed diagnosis of MG - Had a thymectomy in April - get IVIg every two weeks - take Imuran and Mestinon. Crazy...
Gabe

Thanks, Gabe. I appreciate the detailed info. I may never be in the position to need, or even have access to, a SFEMG, but I will certainly benefit from your information and experiences if I do. I'm 'between' neuros myself, and will probably not go back to another one unless the MG worsens drastically. At the moment I'm at a point where my GP and Mestinon are keeping me going. If I do need to ever see another neuro, my GP has said she will try to find me an MG specialist.
Hugs,

Y
Oh Gabe,
You are so blessed that tapering that Prednisone that fast didn't cause you any kind of serious ICU type medicaol emergency. Wow.. You sure have gone through the mill.
Do you feel any difference since having your thymus removed? I read it can take years, and still have to be on some type of medication, and then I've heard of others who after a couple years noticed that they had been improving very subtle and then it hit them just how much they had improved.
I see the neuro muscular specialist in a couple of weeks, and I was hoping to be started on Cellcept, but now, I'm not so sure they will because of the latest study. My body can't go through an operation right now, so they won't do a thyectomy on me.
When I took the imuran, it made me sicker than sick. I truly thought I was going to die. So now, I'm a little afraid to try too many new drugs.
Love lizzie

Sorry that your in limboland

I had a SFEMG done on my forearm and my thigh muscle, both were negitive. I've since read that in order for it to have any accurasy, its suppose to be done on a facial muscle. There was someone on the obt that had a weak eye, so when she got to her appointment she sat and read. After 20 min of reading her eye was defenitly droping, and when they did the SFEMG there, sure enough, it was positive for jitter. I think that someone should really try and exercise as much as posssiable before any testing is done. Even the first blood test that I had, the doctor who ordered the test, he didn't think I had MG, but told me to go and do at least 20 min of exercise before the blood test. I did and it came back borderline. The last test I did, I didn't do that. In fact it was a 5 hr drive for me to see the dr and so I was really rested, this was not a good thing. I've never had a dr test strength and this is what is not ever tested from other dumb neuros.

SFEMG hurt, but not as bad as the EMG test They basically stick a needle thats hooked up to a wire into your muscle and then ask you to flex and relax the muscle. Its not that bad, but stick it in your facial muscle, well........ maybe not.

There are other reason for the symptoms that your having, MS being one, this is were I started, and still doing. Hopefully one day they will know whats wrong and well maybe have something to fix the problem. Until then I try and do things for myself, I changed my diet, and that helped emmensly as well as adding B12.

I hope that you keep reading and learning, really you are the only one that can help yourself. Doctors only are suppose to be helpful guides, although some think there gods. Take care, Patricia

hi Lizzie,
My swallowing has improved dramatically since my thymectomy. The thymus gland was growing up the left side of my neck and since they removed it things have been better. My arms and hands continue to have weakness and my swallowing is still affected. I haven't had a "remission" and don't know if I will but it was worth a shot. I think the thing that has helped me most is IVIg - I get it every two weeks and it makes all the difference.

I am not sure about the Cell Cept study...I was talking with my friend who does a lot of reading about these studies...It would be good to know what a longer study would look like - they only followed people for three months and it would be good to know the size and scope of the study. Statistics are easy to skew and can show different results depending on the variables. CellCept seems to work for some people with MG and not for others - like so many other things. I guess the encouraging thing is that they continue to fund studies. Good luck at your appointment and don't be afraid to try something new. The studies say that IVIg isn't effective in the long-term treatment of Myasthenia but I know that it has changed my life.
Gabe

Hey Gabe,
It would be great if they could at the very least try the ivig, or cellcept on me. All the major MG doctors say that Ivig, is the best kind of treatment as it doesn't cause the horrendous medical problems that the others do. But because it can cost up to 20,000 dollars a month, most insurance companies won't cover it. (nice to know they care ) Prednisone is so cheap, like ten dollars a month. But the long term effects are rather serious.
Love Lizzie

Hi Shari...

I'm new to this forum, but not to MG. My diagnosis was made in 1999 based on neuro physical exam and electrodiagnostic testing. As I am also seronegative for the KNOWN autoantibodies, my neuro confirmed my diagnosis also performing a Tensilon test.

It is believed via MG research that there are other yet-unknown antibodies that affect seronegative MG folks.

So don't let a doc tell you that you do not have MG just because your labs were negative.

Oh: A negative CT chest scan does not rule out MG, either.

I hope you find a good neuro...try to seek an MG specialist. If you call your local MDA, they may have a list of MG specialists. Opthamologists often make the diagnosis as ocular symptoms are usually the first to be seen.

I was declared disabled and went into early retirement in 2001. I have many overlap symptoms and other neurological and rheumatologic issues as well (other than the lupus).

Hope you have gotten some answers by now.

Take care, Shari.