"borderline" SFEMG
 

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.

Losing balance
 

[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

borderline SFEMG
 

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

Hi Stellatum,

Don't overstress yourself about test results because that in and of itself can cause an aggrevation of your symptoms. I too have little eye involvement other than blurry vision when weak. The symptoms are an amorphous beast that makes diagnosis difficult. Did the neuro tell you how much jitter was observed on the nerve bundles? Keep your chin up!;)

Thanks, everyone! Your support is so helpful.

My appointment went well. Phew! The doctor gave me a prescription for Mestinon even though I'm sero-negative and SFEMG is borderline. So, I'm anxious to start. Of course the drug store didn't have it in stock, so that will be tomorrow.

Do you think I'll notice results right away? Or does it have to build up in my system first or something?

I'm so relieved to be moving on to the treatment stage, finally, even if the diagnosis isn't fully established. It's been four months since my symptoms started. I know that's not long compared to many stories--but I've been steadily getting worse, and very anxious about what it could possibly be. I know you all understand that!

That's great news Stellatum!

You will notice the difference immediately. Mestinon only lasts for about 4 hours (and takes effect 20 minutes or so after taking it).

I could feel it kicking in - and easily noticed when three and a half hours had passed. But in between those times, I just felt normal without muscle fatigue. Now I am quite content with 30 mg 4 x/day - - but take more when very active or in the hot, hot weather.

My neuro has given me parameters to work with now (as opposed to a specific dose at specific times). But they started me out slow and followed up frequently until they were sure I had the hang of it. Too much Mestinon can have the same symptoms as too little.

Anyway, sounds like you have an 'enlightened' neuro - and you will do fine. So glad it worked out this way for you!!

Sue

Hooray! I hope the Mestinon helps.

When I first started to take Mestinon I didn't notice anything for about 4 or 5 days.

It took 5 months for Mestinon to do more than just minimize my symptoms (which was wonderful and I stopped getting new symptoms!). I think this was mostly due to me trying to get the dosage correct, but maybe it does take a while for Mestinon to help fully.

I did reach a maximum effectiveness for Mestinon after about 5 months.

Too much Mestinon is as bad if not worse than not enough so be careful and pay attention to your body.

:hug:

That's good news! I would suggest you take the Mestinon with food and plenty of water. It can have some nasty side effects and taking it this way helps to minimize them. You may not have any at all. I just happen to be one of the lucky ones that does.:rolleyes: Aside from that, it's a wonderful drug and usually does it's job well. What mg is he starting you out on and how often? Good luck and let us know how you're doing.;)

Hugs,
Pat

Thanks, everyone. I took my first pill yesterday with food and plenty of water, as you all recommend, and I was relieved to find it didn't make me nauseous. Didn't seem to help my symptoms, either, but I know it's way too early to tell. For all I know, it could have headed off a really bad flare-up--I was due for one, having had two good days in a row, and then a very busy morning. So I'll keep taking it regularly and try to reserve judgment for a couple of weeks until I can see the big picture.

My neuro gave me 60 mg. pills and told me to start with two a day, and try three a day if necessary. Since everyone tells me they work immediately and last for about four hours (the doctor didn't tell me anything about them at all), I'm going to take them with lunch and supper, since I ordinarily feel good in the morning anyway. That makes sense, right? That ought to give me the best chance of preventing my usual late afternoon and early evening shut-downs.

Thanks, everyone, for all the support and information.

Today, I _definitely_ noticed a difference with the Mestinon!

Yippee!! That's terrific news!

Great news!!!! I'll keep my fingers crossed that it's all you need!:)

I'm happy with my neurologist, whom I saw today. Even with a negative antibodies test and a borderline SFEMG he told me my diagnosis is 80% established. He ordered the MuSK test, but told me that even if that's negative, it doesn't mean I don't have MG.

He also told me that since I also have Graves' Disease, we should consider Prednisone or CellCept in the hopes of putting me into remission--I guess having two auto-immune diseases makes me a good candidate. But if we can get my symptoms under control with the Mestinon alone, I doubt he'll be able to talk me into taking those drugs!!!

Anyway, he told me to take 4 60-mg pills per day instead of three, and said I can experiment with how they're spaced out.

I agree with you. As long as Mestinon keeps my symptoms at a level I can live with, I don't want to risk all those awful side effects from stronger drugs even with a chance of remission.

I am so thankful I am responding to the Mestinon, even though I still have lots of MG symptoms. At least I can walk, eat, brush my teeth, see, and do many other regular things with the help of Mestinon.

I do miss doing all the things I did before MG, but I won't take Prednisone or CellCept to try to get back to the person I was before MG. To tell you the truth, I don't like taking drugs at all and my doctor had to convince me to take the Mestinon.

I hope you are feeling better.:)

it's another one of those questions that was not properly reserached regarding MG.

what percent of patients will have progression of their illness if they do not recieve immunosupressive treatment?

I fully agree with you that it is not reasonable to take medications with significant side effects, just so that you could get back to your pre-MG state (and no one promises that even with that you will have full recovery).

but, what if you knew that half of the patients that don't get treated will have severe progression of their disease within a few years? obviously, you would think differently.

on the other hand if you knew that it was extremely rare for that to happen, you may still prefer to take that chance then deal with the short and long term side effects of immunosupressive treatment.

Osserman (at the time there was no immunosupressive treatment) described a sub-group of patients that develop severe MG years after they had very mild symptoms. but, he does not give their relative number in the MG population.

also to the best of my knowledge there is no research that was done, finding prognostic factor that can indicate who will and who will not progress without treatment.

it seems though that patients that have been ill for many years, respond less well to treatment then those that are newly diagnosed. and that patients with occular MG who were given steroids (even at a relatively low dose) have less progression to generalized that those that did not. but, even this is based on very limited data, from small patient groups, that were studied in retrospect.

I think that there is no real risk/benefit assesment of MG treatment, and each neurologist or patient decide regarding it, based on very little data, and mostly their gut feeling, which may be right or wrong.

I'm happy for you that your appt. went well. I hope taking the 3 60mg closer together and adding a 4th will help you even more.

Pat

Whoa. Too much Mestinon, I think. I took pills at 7, 11, and 2 (I was planning to take another at 5, hoping that the closer-together doses would cover the bad time of my day), and I crashed with exhaustion at 2:30. At 4:30 I tried to walk across the room and ended up on the floor. This is after a week with no trouble walking at all.

So, unless that was just a coincidence, then I think I learned some important information today! And now I'm wondering if my original dose--60 mg. three times a day--was too big. Unfortunately, my neuro's out of town for two weeks. I'm not sure he would be able to advise me, anyway--he never warned me that too much Mestinon is counterproductive (I learned that here).

Yep - it does sound like it could have been too much Mestinon.

I've always been sensitive to meds, so I'd rather be weak from too little than from too much Mestinon!! As a consequence, my neuro (and me too sometimes), think I under-medicate.

Then hot weather (more Mesty), increased activity (more Mesty) - - or increased activity in hot weather (much more Mesty...???) - - - - are still puzzles at times.


You and your neuro will figure it out -- it just takes some time and patience. Unfortunately, it just isn't an exact science from day to day.

Sue