-12? Geez, Debra, that's insane. The "gold standard" is to do Bi-Pap or intubate at -21. I've been down to -17 and it is not a good feeling. I'm so sorry you were back in that scary place again.

I cannot imagine it is not MG either. I'm so glad you got the care you needed. And I'm glad you are better. Don't let that make you feel like superwoman or anything! You still need to take it easy.

Ditto on Sue's sarcasm. Insurance companies care about money. They do, however, cave in with evidence, phone calls and a doctor's paperwork.

Docs use plasmapheresis when other tests are negative but I don't know why IVIG couldn't be a diagnostic tool too. I hope they will declare that you have MG.

Has anyone talked about vit. D, calcium, flax or fish oil, B12, etc. because of the Pred? You have to supplement while on it long-term.

Take it easy. I hope you will not end up back there again!


Annie

Oh, if there is a next time . . . dial 911, okay?

Debra,

Wow, I'm going to start getting nervous when you don't post for a few days! Hooray for finally getting some treatment. Not that I know much about it, but the fact that the IVIG works--it binds antibodies!--seems to indicate that it's an antibody problem.

My neuro at one point suggested that we might try IVIG diagnostically for that very reason.

At least you know there's something that can be done if you get worse again. I'm glad you're OK.

Abby

Debra,
I'm so glad that you received treatment and are feeling better. I'm like everyone else. If the treatment that they give you, improves your symptoms, especially to the degree that you describe, then I don't know what the heck it will take for them to give you a diagnosis of MG.

Oh well, at least you have strong evidence in your favor of how much your symptoms improve when you are given treatments for MG. No doctor can deny the information is written in your medical records.

I pray that you continue to do well until they can finally give you the diagnosis that you are so desperately seeking.

Gentle Hugs,
Shari

you have to understand that insurance companied work, according to the diagnostic criteria and guidelines given to them by the pysicians taking care of this illness. They will not go against the state of the art in that field, but can take advantage of "gray" areas.

I am sure that no insurance company will deny treatment of acute myocardial infraction, because the EKG was normal. And no insurance company will deny treatment for leukemia because the blood count was normal.

If the diagnosis of myocardial infraction was defined by cardiologists according to the EKG, or if the diagnosis of leukmia was defined by hematologists as an abnormal blood count, then the insurance companies would have not accepted those diagnoses without "firm" evidence.

If the diagnosis of myasthenia is defined by neurologists, as an abnormal SFEMG, and we read in every text book or review, that a SFEMG done in a weak muscle rules out MG, then why are you blaming the insurance companies for requesting this?

I have recently come across a relatively "open minded" booklet on MG, where it said that the diagnosis of MG is based on 2/3 of the following-

1. response to acetyl-choline esterase inhibitors.
2. diagnostic EMG studies.
3. antibodies to acetyl-choline R or MuSK. but, a strong arguement could be made that a rapid positive response to PLEX or IVIG is enough support for the diagnosis. (only under extreme situations should those be used for diagnostic purposes).

I believe that the person that gave me this booklet got it from the MGFA, so it is accepted as a serious and reliable source.

interestingly in the "further reading" section of this book there is a recomendation for a paper by Michael Ben-Atar, who is the only neurologist that looked at the diagnostic tests (including SFEMG) and assesed their real diagnostic value. (which is not anywhere near what it is claimed to be).

This is a huge step forward (even though it still does not cover all the patients).

Let's hope that in the near future, it will become more widely accepted.

alice

interestingly in the "further reading" section of this book there is a recomendation for a paper by Michael Ben-Atar, who is the only neurologist that looked at the diagnostic tests (including SFEMG) and assesed their real diagnostic value. (which is not anywhere near what it is claimed to be).

alice[/QUOTE]



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.

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.

Annie, do you know about prednisonse longterm? Ive been on it for 2 years from actually a NEGATIVE spinal reaction to IVIG and now have systemic tendonitis and am wondering if its from vitamin deficiency from the steroids.
Any help woudl be appretiated.