Where to go in CT-NY-Northeast USA?
 

I am seronegative for everything they have ever tested me for, despite symptoms that match several conditions to a "T" (like I could have written the description for some of these conditions myself). MG is one of them. My ophthalmologist is certain I have it (not just in my eyes), and when I read up on it, it was one of those "YES!!! THIS IS IT!!!" moments.

Local area doctors will NOT diagnose ANYTHING without a lab report telling them to. They either say, "great! it's not this, your blood test says so," or, "go see someone else". I have been to so many someone-else's, who only send me on to someone else again. Sometimes I have been passed in a big circle. Round and round I go.

I am an hour and a half outside of New York city. Three from Boston. NJ, eastern PA are easily within reach as well.

Can anyone recommend a place to go where there is a doctor/team of doctors that will actually DO something, and get this right? Who won't just send me on to someone else because I'm "complicated" and they don't want the risk or to put in the effort?



(btw, not Yale. Been there, got blown off. More than once (different problems). Yale is just a reputation, no longer deserved. Common opinion among us locals.)

I am seronegative and was finally diagnosed by Dr. David Weinberg in Boston. He specializes in myasthenia gravis and he does a specialized kind of single-fiber EMG.

Abby

I go to the MDA clinic at RI Hospital and have had good success with them.

new to group also
 

Hi,
I just joined and am trying to find my way around here.
Like you, I suffered needlessly for many years - since 1988 to be exact!
I have 3 major autoimmune disorders - mysthenia gravis, stiff-persons syndrome and autoimmune, autonomic neuropathy (w/POTS).

I believe I saw at least 6 neurologists, with the last 3 being in the last 5 years.

I finally met the doctor who listened carefully to my story and ran all kinds of tests, including a muscle biopsy to rule all muscles diseases out. He finally diagnosed me with the MG first, and immediately started IVIG treatments.

There's much more to my story, but I wanted to introduce myself and let you know that my doctor is in Dover, NH. I travel up from Massachusetts which isn't far at all from where I live. Let me know if you'd like his contact info.

Keep your head up high and keep right on pushing. You know your body best so don't give up or give in until you get to the doctor who helps you!

God bless,
Kelley Z.

Hi Kelley, Thanks for replying. I saw your reply to my other post as well.
I am in southwestern Connecticut, the nearest thing you would see on a map to me is Danbury, on the western border with NY.
NH is rather far away from us. I suppose if I can find someone local who would work under the direction of a far-away doctor, and a far-away doctor who would work with the local doctor, that might work. Several of the really big-name hospital systems now have ties to the corporate medical system that is local, so it would probably work better if it is someone with associations like that. But having gone the rounds with several of them on my shoulder problem, I fear the same result with something so vague as mg, and then all that time and money and hope is wasted. I know I should talk to my GP, who is a decent man, about how that would work. I would think he would do it, if allowed. He does flout the system and refer to doctors who are not part of the corporate system, and I know he could get in trouble if caught actually doing that.

My local ER will kill me. And they certainly won't do anything I ask or suggest or insist on just on my say-so. I could write pages on them to support this, so just take my word for it. The neurologists they would call in for a consult are the one group in the area, who I have already seen and are dead-set on "no lab report, no diagnosis". They didn't even have a neurology department or staff neurologist until just the last year, when they finally convinced (forced, by way of limiting access, like they've done to all in the area) the one local practice to join the corporation. And so the good doctors in that practice left the area, like all the good doctors in other specialties have left since this corporation bought everything in the area out. It's bad here. Really bad.

I see there is a similar place in CT in New Britain, the Hospital for Special Care, who list mg in their neuromuscular section, but talk mainly about MD and ALS, mg is only a mention among listings of diseases they treat. So, it is reasonable to expect a mostly MD place to also treat MG? Do they not spend time/website space on it because it is so rare?

Grrrrrr! Sent in, through their system, a request for information so I would know if they were a place for me to go. Within 5 minutes I got back a reply saying if I wanted an appointment, I had to fax them a referral, records, and my insurance information first. NO!!!! I asked you for information!!!! Which is what YOUR 'contact us' box said I could do. This does not look good already. Even a good doctor locked behind a terrible office is no good, I do not have the strength to fight through every time.

Btw, when looking up "doctors who treat mg" by state, and then by town,(on Lifescript, which is what came up from my search),

why is the list mostly psychiatrists?

seriously.:Doh: