Hello, This is my first time on this site, and I have looked at some postings and found them quite helpful. I see my neuro on Monday, and am ready to see what if anything, can be done. One reason I'm posting is to find out about anyone who has symptoms of mg but no positive tests to confirm. Or any other illnesses that are similar to mg but not mg - how to test. And any suggestions. I currently have supportive neuro and gp, and was diagnosed with sleep disorder last year - a severe case (PLMD - periodic limb movement disorder). Even with that treated, still muscle weakness.

I don't have a clear diagnosis of mg because of negative test results. Symptoms began with vision ten years ago, diagnosed probable mg by opthamologist, and neuro diagnosed mg based on mestinon response in 1998, and autoimmune thyroid disease. Scheduled thymectomy in 1999, but insurance dropped my doctor group so lost neuro & optho. Surgery cancelled. Found great new gp, but the neuros all thought nothing neuro wrong with me. Saw 4 neuros, and kept the 4th just cause it I was tired of trying to prove myself.

Anyway, always neg AchR, clear MRI (no MS which my aunt has), neg nerve conduction, neg SFEMG (but just off mestinon for a few hours). All this in 1999, 2000. Stopped mestinon after SFEMG - the ranges between strenghts and weakness too extreme, and adapted my life.

Stopped working 2 years ago, husband and I rent house since August with my mom, who has helped stabilize daily life by helping and/or doing cooking, laundry, shopping, etc. Even with help, I have limited stamina. Social Security disability turned down, on appeal.

But right now it's about - I have slowly but surely progressed, gotten worse over the ten years - so what should I do now? Immunosupressants without diagnosis, what tests. It's why I'm seeing neuro. Bottom line is - I'm frustrated and scared. I have run out of ways to adapt my life, and feel I need to do something - particularly medical.

Thanks, feel better just saying all this. Rach

Welcome, Rach! Your story is one that is very very familiar to many of us. I was fortunate in being originally diagnosed by an MG specialist with a postive Tensilon test. But in recent years I've had 2 neuros try to take my diagnosis away because I'm seronegative and had a negative EMG. I've never had the single fibre EMG, not have I been tested for other antibodies. Though from what Lizzie posted after seeing her neuro, it is possible to have negative antibodies one test, postive the next, then maybe back to negative. If you do have MG, it can be extrememly difficult to diagnose. Neuros tend to want us to all present exactly alike, but I don't think any two of us have exactly the same combination of weakness, antibodies, test results, etc.
One piece of advice I would give you. Start tomorrow, and try to REALLY wear yourself out. I mean, to the point of exhaustion. That way all of your symptoms will be at their worst when you see the neuro on Monday. Whether it is MG or something else, give your neuro as many evident symptoms to work with as you can. The good thing is, if you can get a diagnosis of MG, or at least a sympathetic neuro who realizes there is something wrong, though he might not be able to put his finger on exactly what it is, that will go a long way toward helping you on your appeal for SSD.
Not that I hope you turn out to have MG, but I know that for you, right now, having a firm diagnosis is better than not knowing anything.
hugs,

Your story is similar to alot of us.

Sounds like MG to me, just because you fail that SFEMG don't mean anything, sorry. Your muscles are supposed to be warmed and exersied before this test is performed, and no mestinon for at least 24 hrs. You responded to mestinon and that means something. Where theres smoke theres fire................. so either your not making enough of the acetacholine for your muscles or something is blocking it from being used properly. You should also have had the Tensilon test. You have other autoimmune issues too, if ya have one likely you have two. Also just because you had one MRI for MS does not rule that our either, sometimes it can take along time to see plagues on your brain and sometime never, you also need your spinal cord MRI'ed.
Do you have crashes? Long period of weakness, that take weeks to get better.
You could have Chronic Fatigue Syndrom, that goes with sleep disorders and PLMD.
Bums me out when this diease can easly be dxed, you just need to find a dr who knows what the disease is all about. Like muscle weakness, they should see how many times a person can get off the floor, climb stairs, comb or brush your hair, these are all the things that make this disease a pain and also give it its name.
Anyways lois is right, burn yourself out good, go and walk, climb stairs.
I hope things go well for you tomorrow, take care, Patricia

Thank you for your supportive and helpful replies. I had the Tensilon test, and I am one of the few whose blood pressure plummets with Tensilon. I came to with my neuro trying to get a pulse on my hip, and getting ready to call for a crash cart. That wasn't fun! And, I asked him if my eye lid came up before I went down... unfortunately - no.

I am working on wearing myself out for tomorrow, but what I really want is a nap! I'll ask about the spinal MRI for MS, and also about trying to establish some fatigue at the neuro's and then taking mestinon so he can observe the response. My original neuro based the diagnosis on mestinon response. Don;t have any other chronic fatigue symptoms, so that's ruled out. MG really has always been the best match with my symptoms.

It is helpful to know just cause one neuro says yes, others down the road don't agree and take away that diagnosis - which is what happened. As I mentioned in my first post, this all started ten years ago, and I managed so well for so long with adapting and "bucking up" and really redirecting my life in a much more meaningful and positive way since becoming sick.

So I am really surprised by all the emotional struggle I'm having lately. I've never posted anywhere or gotten involved with any mg support groups - partly because I've been afraid I wouldn't be accepted without the diagnosis. ANd partly because I just wanted to make things work. A lot of sadness going along with the fear, frustration and a bit of anger, too. Figured I was done with all that.

Thank you again. This is so helpful to me. I will post a follow-up after my nuero - after I rest that is! Rach

Have you had your apt with the neuro yet, Rach? How did it go for you?
Hugs,

Waving hello, but ya can't see me...smiles..

First things first...so sorry you're going through all this. It can be a real pain.
Your story is a familar one to many. It can take years to get a firm diagnosis, and even then, some neuros want more proof. They get afraid to prescribe some of the meds that we have to take, as they are very dangerous to our bodies. Once on steroids, it's extremely hard to get off them.
Patricia is right about the MRI, it can take years for it to show up. Nothing is ever simple is it?
Hang in there, it will get better, however, it may get a little more frustrating before it gets better. ......sorry...just wanted to warn you.
Many tests have to be redone, over and over again. I agree with Lois, get yourself worn out a bit, not to the point where you will collapse and end up in a crisis, but so your doctor can see what is going on.
I know, I tend to always rest for a few days before I go in, so unless, I"m going through a weak period, I'm much stronge timesr than what I normally am. But my doctors know that now. and have seen me many times in a weakened state.
But limbo land is not a good place and I do understand
come and vent often.
love and hugs
lizzie

I was diagnoised with mg about 3 years ago, ocular. Tried Mestinon and had a problem with it. I was tested again and had a negative results. Do I have it or not I ask? Having to muscle testing showed me on the border. Now I have been told if you have it, you have it, and it is not curable. I have had a pletoria of physical malidies, mostly the endocrine system. I am to go to Mayo Clinic in Rocherster, Minn in January after about 6-7 years of slow but steady health decline. I am looking for answers also. Been to many specialists in many areas with no answers. I have even been referred to as a "medical nightmare". Three years ago I had the droopy eye and now I have an obital pseudo tumor that causes ptosis. I am 50 going on 90. I have been on high dose prednisone for the tumor for over 3 mouths with no change. Now they are thinking a pituitary tumore or cushing's. I just would like to know if i can have my life back or give me a death sentence because this is not a life. We have to be advocates of our own health, we are the one's that know how we feel. I would like my 40's back because I feel that I spent the majority of them declining like someone in their 80's.

I am about where you are at Rach, I am at the end of my rope. I also have been diagnoised with RLS, PLM and sleep appnea. Had hyster and thyroid out within 3 mths. Hyperparathyroidism, severe osteoporosis, high cholesterol, low blood pressure, orbital pseudo tumor, and the list goes on and on. I am just 50 and I have been declining for about 7 years. Hard to tell when the last time I felt human. Like you, I just need to know that there are people out there that feel like me...........a medical freak.
Take care and contact me if you would like.
Judy

Lois, This is what I needed to hear, the positive than negative tests results. I have had the single fiber emg and it showed me border-line. What is border-line I ask? Either you have it or you don't........I thought. I have only had one bout of extreme fatigue which kept me in bed for about 3 weeks and that was about 3 years ago. Mine "was" thought to be ocular mainly. I just don't know anymore. I just want my life back. I know that everyone on hear understands that. Either cure me or kill me. This is no way to live. A diagnoisis is better than limbo.
Thanks for listening,
Judy

Judy, it can be so very, very frustrating to be in diagnosis limbo. My GP and I have resolved my limbo by just ignoring the neuros who tried to take away my diagnosis. She keeps me in mestinon, and welcomes any research I can take her on MG, but the situation basically keeps me cut off from access to any other treatment than Mestinon. Fortunately, my MG is not terribly bad, and mestinon is sufficient for me. That and knowing how to pace myself. But I find that each year more and more things that I love to do have to be given up. I had no garden this past year, for the first time in over 30 years. Of course, recent gardens had become postage stamp size, but at least they were gardens. This last summer I couldn't even rise to the level of a flower-pot!
Just hang in there, and come and vent whenever you need to.
Why did they take your thyroid out? I had a partial thyroidectomy back in the 1960's, plus had a goiter removed. I had a super hyperactive thyroid! But they didn't take all of the thyroid, just enough to get the thyroid hormones down to a reasonable level. And what he left me was enough up until about 8-9 years ago, when I had to go on thyroid medication.
Hugs,