Michael Benatar MBChB, MS, DPhil
Associate Professor of Neurology
Associate Professor of Epidemiology
Director, Emory Electromyography Laboratory
Co-Director, Emory Muscular Dystrophy Association Clinic
michael.benatar@emory.edu


Excellent USA southeast MG Doctor.[/QUOTE]

Do you know him personally?

alice

Do you know him personally?

alice[/QUOTE]

I know Dr. Benatar (he's my neurologist) and I agree completely with Christy - he's an excellent MG doctor.

I know Dr. Benatar (he's my neurologist) and I agree completely with Christy - he's an excellent MG doctor.[/QUOTE]

I hope you don't mind me asking, but what makes him an excellent MG doctor?

alice

I saw Dr Sheean yesterday and it was absolutely fabulous--WAY better than I could have ever hoped. He was tested so many more muscles groups (fingers, legs, arms, back, stomach, neck, eyes, etc) than any other doctor and in different ways too. He was genuine and thorough. Even though I felt very strong compared to how I have been, there were muscles that were very weak he was saying and the testing caused me to be short of breath at times.

He said that there were specific tests that an MG specialist looks at that other doctors may be unaware of, certain muscle groups. He said it is "very very likely that you have myasthenia gravis." When I asked what else it could possibly be, he said "That's just the thing. It couldn't BE anything else." He went onto say it's only that there is no objective test yet because of the seronegative issue. He has several people in my situation. I just have the positvie icepack test, strong response to mestinon, most giant list of symptoms possible, and huge positive response to IVIG.

He is going to do a CT of my chest because he said the CTA chest is insuffient since they weren't visualizing the proper area. He is ordering breathing test sitting and lying down to check the diaphragm. I have an SFEMG scheduled for next Wed. He wants to do 5 more days of IVIG starting a week from Monday because I am too weak compared to normal and because he wants to get me off prednisone to get me in shape for a thymectomy!!!!!!!!!

And he said he would be my new doctor!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!:: D

So I as diagnosed as I can be--finally. Boo and yay? And the SFEMG is really just for the insurance people. . .

debra

Debra, That is fantastic news! Finally. A diagnosis and a good doctor. It sure sounds like this guy is a keeper. What a relief, eh? Well, sort of.

Annie

Ditto to Annie's comment. Sorry you've got MG - - but really glad you have the dx!!!

I'm so glad that you got a diagnosis - now you can move on from here. No, it's not great to have MG, but at least now you know what you are dealing with. Now, your other doctors will know that you have this and that will be a VERY valuable information point from which to work in the future. Plus, your doctor will know which medications to avoid when treating other symptoms - that could literally mean the difference between life and death!

I don't think that some people realize how very important a positive diagnosis can be, but for us it means that our doctors aren't chasing symptoms trying to figure out what is wrong (or thinking that it's all in our heads). I got a "fluke" early diagnosis, but I realized that some of the mild things that I had been experiencing for the past couple of years had probably been early indications of MG. It's such a relief to know that there was a REASON that I was being so lazy!

Just had my first SFEMG and I cannot believe it was normal. He tested 5 different muscles!! But considering I just had 5 days of IVIG, am on 50 mg of prednisone and I could only hold the mestinon for 12 hours, I suppose I shouldn't be surprised. So now I'm seronegative and have no objective tests besides the icepack test and response to IVIG still. This is so frustrating.

Tomorrow I am scheduled for breathing tests w/ and w/o mestinon to check diaphragm strength and I am praying that will prove something---anything at this point.

I was supposed to have a CT on Monday but they are going to either cancel the contrast or do an MRI for the thymus instead. Did you guys know the iodine is used in the contrast which is contraindicated in MG? He is not cancelling it because of that though but because I had hives for a week after my CTA chest and they think I may be allergic to iodine and the last thing I need is more drama. . .

My thymus better be huge or I am going to have to get a muscle biopsy next.

Hang in there with me all you seronegatives!! They are still totally certain I have MG. It's just SO difficult to get to. . .ugh!!!!

The only good news is that they just revoked my Meniere's Disease status based on the MG diagnosis. The hearing loss, balance issues, etc are due to MG they are saying. . . .

debra

Debra,

I am so sorry you are going through all this. Yes, 'tis true they have to be really careful with contrast and MG. When I had my CT scan they used the 'light' iodine (they said it was used for patients who might have an allergic reaction). It worked fine and proved my thymus was ok.

Anyway, I know what you're saying - I'm seroneg and 'barely passed' my SFEMG. Luckily, my neuro put me on Mestinon anyway - - and so far that is the only med I have needed.

Hang in there - at least your neuro is still engaged and still working to get a dx! That's a very good thing!!

Sue

I hope you get some news soon! When you mentioned that about iodine, it got me thinking. I have a form of Celiac Disease called Dermatitis Herpetiformis - it's a dermatological manifestation of CD, and iodine will trigger a rash in some people with DH.

Your symptoms certainly sound like MG, but if you have one auto-immune disease, you are more likely to have another one. You may want to ask your doctor to test you for Celiac Disease while he/she is running other tests. Be aware, though, that about 10% of people with DH will NOT test positive on bloodwork for CD (I'm one of them) - they still have it, but the antibodies are expressed on their skin and not in their blood.

Many people on this forum have benefitted from a gluten-free diet - it won't cure MG, but it does seem to lessen some of the symptoms. A lifelong GF diet is currently the only known "cure" for Celiac Disease/Dermatitis Herpetiformis. People with DH are advised to limit their iodine intake - that can be done fairly easily by using uniodized salt at home when cooking.

Here's a link to more information:

http://neurotalk.psychcentral.com/post8767-2.html

Hope this helps!