Please help! MG question...
 

All-

I apologize in advance as I suspect this question may be regularly asked, but I'm desperate for help.

I am seronegative for all antibodies related to MG including Musk and Lems ( I tested positive just barely for the striated antibody but the dr told me that was insignificant).
I have had 2 single fiber EMGs and both were unremarkable.
My PFTs were normal.
CT of chest was normal.

I do have celiac diseasee, pernicious anemia and a history of graves disease (my Thyroid has normalized and I am off all meds for that which is great though I do have 2 small nodules).

My left eye has been very droopy for over a year and recently became much worse. My right eye is also droopy though not nearly as bad as the left. EVERYONE comments on the change in my appearance. I was a successful model for many years and my eyes were something that landed me regularly in magazines and on national billboards. I look vastly different now ( like I am on drugs or severely exhausted/depressed). I also experience dble vision very regularly.

My speech becomes very slurred fairly regularly and, less frequently, my breathing is a little labored.

I am exhausted. I am an avid athlete and yet I'm completely exhausted all the time and recently filed for disabilty from the job I love. I feel so sick!!

I have seen 2 neuros for an opinion. One, a leading MG expert, totally dismissed MG based on the fact that my bloodwork/nerve studies were clean. Despite ptosis, he said my eye looked "fine" which i assure you it does not.

The other started me on very small dose of mestinon (30mg 2xday) which did nothing. He then upped it to 30mg 3x day and I feel a wonderful and significant improvement but it runs out quickly and symptoms come bk after just 3 hours.

My questions are:

Is this MG despite the normal bloodwork and nerve studies and opinion from MG spec at leading institution?
Does a good response to the mestinon confirm a dx?
Should I concurrently be on prednisone to try and get at the underlying disease?

My deepest appreciation for any advice and apologies if you have fielded this question before. My dble vision is bad enuf that looking thru the threads is too much for me at the moment.

Many thanks,
Needananswer

Til somebody smarter and with a better memory pops in......

Mestinon does NOT help unless you have MG. Some (really good) neuros will diagnose based on your response to this alone.

Mestinon ONLY lasts for 3 to 4 hours -- so your experience is spot on.

Yes, you can have MG with negative bloodwork and SFEMGs.

Uh, I don't know about prednisone. It is the "good/bad" drug. It can help you, BUT cause all sorts of other problems. Read a LOT before you make that decision.

Hi. I'm so very sorry you're going through this. My story is very similar. I had Graves, which I treated with thryoid suppressants (PTU) on and off for 15 years. There is new evidence that PTU and methimazole can make MG worse. In my case, I suspect I had MG but the symptoms weren't apparent, and then the PTU triggered it and made it worse. http://www.ncbi.nlm.nih.gov/pubmed/1798220

I tested negative for all the antibodies tests. My first SFEMG was "borderline." My second was "mildly abnormal but not enough to justify a diagnosis of MG." I have no response to Mestinon. My neuro, upon my impassioned plea (I can't live like this! We have to do something!) sent me to another neuro an hour and a half away. My local neuro is the neuromuscular expert in the area, but the one he sent me to has a special interest in MG. He did a third SFEMG and diagnosed me on the basis of it.

The neurologist who diagnosed me was an neuro-ophthalmologist. See if you can get to one of those!!! There are many of us on this list who got a diagnosis from a neuro-ophthalmologist when we couldn't get one elsewhere. The strange thing is that I hardly have any eye symptoms, and the neuro-ophthalmologist insisted on doing the SFEMG on my face, around my eyes, anyway.

My understanding is that a clear response to Mestinon is evidence that you have MG, but not all neurologists would consider it conclusive evidence. A neuro-ophthalmologist might give you a very easy test you can do at home, which is to ice your droopy eye and see if it perks up. If it does, some neuros consider this to be very strong evidence of MG. There's also a tensilon test, where you're given a shot of a drug similar to Mestinon, to see if it has an effect on the ptosis. I think a neuro-ophthalmologist might be most likely to use these tests.

Abby

I am seronegative as well. My symptoms all respond to mestinon. The dosage you are taking is so small that it wouldn't do much for me. I take 60 mg 4X a day and a lot of us take more. I hope that you can get somebody that can help you.

I am so sorry about how you feel. I also feel a great sense of loss because I don't look as beautiful as I did with these wonky eyes. I am not young anyway, and my career doesn't depend on it, so it's not as great a loss as it is for you. The mestinon has given a lot of it back to me.

Abby is right about the ice cube test. It is very significant apparently. You need to find somebody that can figure something out. I think that an ophthalmologist is a good place to start. Be persistent and don't give up. And a word of warning; most of us here had doctors say we were crazy before they made a diagnosis.

I would try to get an increase in the mestinon dosage and use it.

I hope you feel better. :hug::hug::hug::hug:

Hi Needananswer,
I fully agree with Celeste. I personally take 5X60 mg of Mestinon per day, one tablet every two, three or four hours depending on how active I am.
If the symptoms come back after about three hours, you might try to take one tablet 20 minutes before that and see what happens...
Reverse to the initial schedule if you notice anything abnormal.
Maurice.

I agree with Jana.

From personal experience and research, I have learned that Mestinon does not work for symptoms, e.g., eye droop (ptosis) and muscle weakness - unless these symptoms are from MG.

But who knows? I have read that it was given to soldiers to protect them from nerve gas in Operation Desert Storm.....

In my opinion, I think your dosage of 30 mg is a little weak; 60 mg every 3-4 hours seems to be what most MG patients are prescribed. (This is my RX.) But perhaps your doctor is being conservative with his initial prescription for you - because, please be aware, that sometimes if one takes too much mestinon - MG symptoms can exacerbated. I have had that happen - once.

Don't be afraid of mestinon - if it is working for you, you will learn to listen to your body and - generally know when you need it.

My eye-droop (ptosis) also gets better (for a couple of minutes) - with the "Ice Test". I have read and was told by my neuro-opth doc that this only works with people with MG. This GREAT doctor performed this test on me before he sent me on for Tensilon, blood tests and SFEMG.

Tensilon test was positive. I am sero-negative (blood test) - with positive SFEMG.

Unfortunately, I have had to use prednisone for my double vision issues. Agreed, Jana, that prednisone is something one has to think about VERY carefully before using. My dosages have changed during MG treatment. (I cannot use Imuran)

Hang in there - diagnosing MG can be a long process. As it can be for other illnesses and conditions.

SoftTalker

p.s. Jana you sound pretty smart to me.

And as to your "better memory" statement - I betcha that would be a great topic for another thread.

SoftTalker

Wow I feel like I asked that question. Im on perdizone for about a month all ive noticed is water retention and about 10 xtra lbs. I would fight it off if possible. I agree that MG diagnosas may be an educated guess. My results all come back to the contrary of what they are looking for. I was diagnosed in 2007 I went into remission and actually figured the docs were wrong. But it came back with a vegeance 5 years later

Hi - So sorry that that it happened like that Mathew......

Can you describe the process of your remission, did that take a long time?

Thanks,

Anacrusis

I have actually been on prednisone now for a month and I expected weight gain and was warned about it. With little or no exercise I figured it was part of what I would have to deal with. Instead I have lost 10 to 12 pounds in the past month and I am wondering if anyone else has seen similar weight loss. I am now taking 80mg every other day. Plus 60mg of mestinon 4 to 5 times a day.

I agree with the others about the neuro opthamologist.. I kept telling my neuros my face and eyes were droopy, but they thought they were fine (of course if you look at a picture of me from 18 months ago and one now - its a SHOCKING difference).. I went to a neuro opthamologist and didn't mention anything about my drooping eyelids, just the double vision and he immediately mentioned my eyebrow and eyelid ptosis on both eyes- they are very observant and very good since there are so few of them out there, they have seen A LOT of weird hard to diagnose illnessess.. In my experience it is hard to find a neuro that really will push to find whats wrong if your not dragging a limb! But good ones are out there I hear!?! Good luck!

Thank you!
 

Thank you all for your thoughtful responses. I am so grateful for this community and clearly your experience speaks volumes. As many of you know, this process can be especially lonely and frustrating. My friends are frustrated that I am not better yet and if I'd only do more yoga, meditation, fill in the blank with said suggestion.....Ughhh, they think it is frustrating?! And trust me, I value all of those therapies but as of yet none of them have restored my eye functionality:Sigh:

The neuro did up my dose and gave me a lot of autonomy with respect to playing with my dosage but said not to exceed 180mg/day. Is this still low?

Per all of your suggestions, I am slated to see a neuro-opthamologist tomorrow. My area was enormously affected by Sandy so let's hope I can get there.

Thank you, again, for sharing your perspective and the support. It means so much.
:hug:

neuro-opthamologist is a great choice. Mine gave me Prednisone and it cleared up my double vision It never came back after 2 years but still fighting MG. Good luck tomorrow.
Mike

Thanks, Mike.

My dble vision/blurred vision is killing me at the moment. My rheum prescribed a 10 day course of prednisone but the neuro said, "no way...if we go that route we are going to do a long course/taper"....He also said, "let's keep you on the mestinon for another month before we decide". I feel like we are wasting valuable time......

Any advice?
Thanks.

My neuro-opthamologist put me on 80mg of Prednisone. When my vision returned we tapered off. I have since gotten Prednisone 60mg to try to get my MG under control. After being on that dose for a while it was killing the muscles in my legs. Reached a point I almost had to get a wheelchair. I'm down to 20mg and doing pretty good. We are still tapering. Cutting 2 1/2 mg every 3 months. I didn't drive for one year due to double vision.
Mike

Did your doctor perform a tensilon test?