[Rach]

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

[loisba]

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,

[turner]

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

[Rach]

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

[loisba]

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

[Maxwell'sMom]

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

[heyjude5050]

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

[loisba]

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,

[Rach]

Thanks everyone. I do find it so helpful to have a place to come to talk specifically about MG. My neuro appt went fine. We decided to try me on provigil for daytime fatigue. He said it is used for either/both physical and mental fatigue. My muscle weaknes was not really noticeable though I had tried to wear myself out.

Provigil is a strong, strange drug from my brief use of it - started 100mg last Monday. It is "amphetamine-like" with low addictive qualities... I am certainly experiencing a level of mental clarity - focus and follow-thorugh, as well as not getting sensory overload - sound, sight along with irritablility - when I get fatigued. I am able to lengthen my days a bit, and the muscle weaknes - while not improved - stands out more distinctly.

It's a little uncomfortable in my mind to take a pill for the PLM to sleep and a pill in the morning to stay awake - I feel a bit like Judy Garland! But, I remember I was desperate when I went in, willing to try anything, and I want to see over the next month or so how this works. Thanks, lizzie, for reminding me that steroids are hard to get off once you get on. I walked in to my neuro appt ready to even try that at this point without knowing what's wrong, and I do feel better that is not the route we chose at this point.

I'll see my neuro again in Feb, and we will talk some more about SFEMG - since no on at Kaiser does it, he'd have to get autho to go outside and that is never easy.

I have often referred to this experience over the decade as a medical mystery tour, and know there are multiple things going on. My GP is comfortable dealing with me without specific known diagnosis (as is neuro), and my GP has spoken of the art and science of medicine, that there are many things they simply don't know. I find that helpful. Having nonjudgmental medical guides is hugely important to me.

Remebering to pace myself is always a struggle. This year I finally reached a point where I stopped fighting all the time, and gave in to my body's rhythm, and while there is great loss in that, there is also energy in not fighting all the time. Like you, loisba, each year I have to give things up. I have wanted to be acknowledged for the "heroic" adpatations I have made in my life by doctors, but that's just not the place to go for that.

Judy, I really understand what you are going through. It is hard to deal with being so vital and losing so much. And limbo is a painful place to live. I have not been able to return to my old life or my old self, but I have found out how to live this life. I am not a "ilness is a gift" person. Healthy people love to ask about that, and I usually say if it was a gift, I would wrap it up and give it away. Like it or not, this is the life I have. Good and bad, this is it. I am grateful to have this place to come. Thanks again. Rach

[heyjude5050]

Hi Lois,
I had graves disease that probably went undiagnosed for about 4 years. I was in thyroid storm when they finally did the blood work and then the uptake. I absorbed the iodine in less than 2 hours. They actually thought the machine was broke and then did a cat scan of the stomach to see if I had dissolved the pill. I was only 39 and three doctors told me that I was wearing my body out very quickly. With a resting heart rate of 160-165, it was assumed that I would have a massive heart attack in the near future. I opted for the surgery and they had to remove it all.
I take 100 mcg of synthroid daily and until recently had no real problems. Four years ago I gained 20 lbs with a TSH of 0.02. No one has been able to figure out why my levels fluctuate so much and these 4 years have been one illness after another. Seems like we can't concentrate on one for very long because another issue crops up. I really do feel like a medical freak.
It means so much to me to talk to people who understand how it feels to feel so crappy and at times show no outward signs of illness. Some times I feel like a hypochondria who real has.........
I am sure you understand. I also would love to talk to anyone who has been on steroids for any length of time. I am at 26 mg from 65 mg. This has been for 3 and 1/2 months now. I have had a horrific time with this drug and am now off of work because my already severe osteoporosis is exacerbated to a point that I am in constant pain and am not allowed to pick up anything heavier than a gallon of milk. I never leave my house due to the way I look and feel. The steroid-induced psychosis if unreal and the few rational days I have make me realize how crazy I was. It is always nice to see yourself being a lunatic, LOL. What a mess, hey?
I just can't wait to get to Mayo............. I hope to God that they won't say that they have never seen a case like mine!!!!!! I have heard that enough. Just having someone listen and understand is so therapeutic.
Thank you, thank you. I feel like such a burden on my family and friends.
I am anxious to hear back from you and if you could find someone who can relate to my prednisone nightmare, I would be forever indebted. This has been the hardest part of all my illnesses put together.
Your friend,
Judy