I'm still in the "trying to get diagnosed" stage. I had a single-fiber EMG yesterday, which the doctors said was "borderline." So I'm waiting on the antibodies test, which takes a long time to come back. If that's negative, it will be really discouraging to me, since no one has any other ideas on what may be causing my symptoms.

They did the SFEMG on a muscle in my forearm. That's not a muscle that's been giving me trouble, and they got me at my "good" time of the day. I'm hoping that those are the reasons that the results weren't conclusive.

I have (so far) NO eye involvement--normal vision, no ptosis. I know that's unusual for MG. The muscles that are giving me trouble are in my legs and neck. I'm especially having trouble keeping my balance while walking.

I know that you all understand the frustration of the long process of trying to get a diagnosis. Any experiences you have with this sort of thing would be helpful. Thanks.

I hope you do have clearly diagnostic tests. yet,

a small (but not negligible) percentage of patients with myasthenia will have completely normal tests. they also (not independent of it) tend to have a more atypical clinical picture.

I personally think that those patients have antibodies (or genetic abnormality) that is different then the typical MG. some will have unrecognized congenital myasthenia (which can present in adulthood), and other will have not yet recognized antibodies, and some may have a combination of both.

you have to learn your illness, and trust yourself and not accept unreasonable answers, and those that don't make sense. yet, be attentive to learn as much as you can from other patients and your physicians.

it may not be MG, but some other illness. but, then you should have some findings that would fit that. you can't have "nothing" unfortunately (even though I am sure you would be glad if you did).

or as once said to one of my neurologists- you managed to convince me that I don't have MG, but now can you please convince my illness.

alice

Thank you, Alice. I read some more about borderline SFEMGs and seronegative cases. Meanwhile, today I tried to play my fiddle for the first time in a few months, because I was having an extraordinarily good day, and my arms don't usually bother me much even on a bad day. I used to be able to play for a couple of hours--tonight it took ten minutes to utterly exhaust my arms. What else could it be besides mg? I've had every other test anyone can think of.

What puzzled my doctors is that my first and main symptom is "tiltiness"--I lose my balance when I walk and sometimes stand. I just realized that the problem is not in my legs--it's in the muscles in my side and back. They're weak, and I have trouble holding myself up straight when I shift my weight from side to side, like you do when you walk. That's why I lose my balance.

Tell me that makes some sort of sense. I'm really frustrated now. If my antibodies test were positive, the doctor should have called me by now (I suppose I can call the office and wrestle his staff to the ground again to find out for sure). When I see him in a couple of weeks I'm going to ask for a MuSK test.

Stellatum,

First off - hi and welcome!

From my first clinical exam, my neuro said MG before any testing. And I don't have obvious ptosis either! They gave me Mestinon - waited about 20 minutes - redid the complete clinical exam. Confident it was MG, tests were scheduled: antibody, SFEMG, respiration and a CT scan for thymus. I am sero neg and had a borderline SFEMG. Passed the others too.

After the tests came back - my neuro wasn't thrilled - but said a small per centage of MG patients have neg tests....but they still have MG.

I've been on Mestinon now for 8 months and have had to step up the dosage once already and probably again at my next appointment.

Hang in there! I was very lucky to have found the 'right' neuro on my second try!! Sometimes it's a long haul to get a dx when the tests don't cooperate - but keep at it.

Good luck - and keep us posted.

Sue

Thank you, Sue! That is wonderfully encouraging. I see my neuro on March 1, and I have new, much more typical mg symptoms to describe to him now. I have some confidence in him, because he ordered the MG tests on the basis of the symptoms I had a month ago, which were a lot vaguer. Maybe he will be willing to consider the possibility that this is MG even if the tests aren't conclusive. Maybe he'll try me on Mestinon. If not, you and the others here have given me hope that if he won't consider it, another neurologist might.

[QUOTE=Stellatum;623713]
What puzzled my doctors is that my first and main symptom is "tiltiness"--I lose my balance when I walk and sometimes stand. I just realized that the problem is not in my legs--it's in the muscles in my side and back. They're weak, and I have trouble holding myself up straight when I shift my weight from side to side, like you do when you walk. That's why I lose my balance.
[QUOTE]

I lose my balance on occasion, although the Mestinon helps. I agree with you about the cause - I think I lose my balance when I get one-sided weakness. I thought at first the cause was double vision, but I am still losing my balance at what seems like random times even now that I don't have double vision all the time.

Along with the balance problems, sometimes my feet don't land where I try to put them. I love gardening and I have to be so careful not to step on the plants! I feel so clumsy.

Before I started Mestinon I was running into walls and tripping on everything and couldn't walk a straight line if I tried. And I couldn't even stand without constantly adjusting my feet so I wouldn't fall over.

I think that MG symptoms vary and many of us have symptoms that puzzle our doctors.

I hope you get a diagnosis soon. Maybe your doctor will trial you on Mestinon.

According to my doctor...MG symptoms often become progressive and continue to get worse without treatment. He said that Mestinon usually stops MG from getting worse. I know I kept getting new and worse symptoms weekly until I started Mestinon. Mestinon is such a lifesaver for me.

Let us know how it goes.

Last night I started having double vision when I moved my eyes upwards. So, now my symptoms are more "typical," and I hope that will make it easier to get a diagnosis. I see my neuro on Thursday--I really hope to walk out of the office with a prescription for Mestinon. I'm anxious to start treatment before the next new symptom hits.

Hi Stellatum

sorry to hear you are having double vision, but yes maybe it might help get a diagnosis.
Hope you get the help you want on thursday.
Kate

Stellatum,
Please keep us posted on what you find out this week. I too have some balance problems. I have told my Neuro I just feel like I am so clumsy now. I do have ptosis and blurry vision too but not everyone has eye involvement. This disease affects everyone differently. Hang in there and hopefully you'll have some answers soon. We'll be anxious to hear what you find out.
Kendra

Hey Stellatum,

Welcome to the group! Your new symptoms should certainly help with a diagnoses or at least getting started on Mestinon. Good luck at your appointment and let us know how you make out. Take care.

Hugs,
Pat