Hi welcome to the group,

sorry to hear your troubles with fiding a neurologis to treat mg.

any hospital, university hospitals and other have a number of neuros whom are neurologist for neurological inmune disease has mg. ms. ect.

also when you talk to one you should make your case clear and expand your conversation that he/she have a clear inderstanding of you

gp's, family doctors are not the most indicated to treat thi disease

best of luck (fighter)

Thank You
, trying to find a new one the past 3 didn't seem to listen they tell me take this and come back in 4 months was admitted with crisis and the neuro showed up 3 days later its was the attending who treated me before that fortunately he new about how to treat M/G

hi
Thanks for the explanation, thus i can give you a tip.
dont hesitate, when you see that you gone to have crisis just take yourself to the emergency and demand to see a neuro
best of luck

Thanks again I will remember that I just got an email from a friend with the number of another Neurologist who is su0posed to be really good I'm
going to call tomorrow thanks again for your advice.

That is more than pathetic. What the hell, can't these f'ing doctors look up MG in a book? Wow, talk about, don't give a damn. I am not fond of my neurologist either and in fact, have found most of my help from this board. Get someone to prescribe you prednisone and Mestinon and go from there. Go to a teaching hospital, at least they are willing to learn. The medical profession is horrible, I hate it and believe me I have been put through the ringer too, until I got a hold of myself and just took the meds and am still trying to figure out a livable dose. Don't be fooled when you start feeling good with a low dose of Prednisone.

I'm amazed! From my own experience, once diagnosed, certainly, with a neurological problem, you end up in hospital on a Neurological Ward for at least a week while they work out what is wrong with you and what medication begins to work for you. At that stage, I never even knew that I had MG, let alone measure the capabilities, or otherwise of the Doctor - I had no idea, whatsoever what MG was all about. You seem to do things differently.

Sorry to hear about your problems seeing a neurologist. They can be very hard to get an appointment with as most of them don't treat MG or don't have experience in treating it.
The treatment of MG is not as complicated as it would seem
-- a clear diagnosis first -- do you have that?
-- Mestinon for day to day symptoms -- usually "as needed" up to a limit of something like 8 pills a day.
-- Immune suppression medicine-- some like prednisone start helping in a few weeks to few months; others take a year or two to help.
-- emergency type treatments for crisis -- IVIG infustion or PLEX blood filtering.
The problem with treatment is that most of the time it is just what you were prescribed:
-- take the immune suppression drug for several months along with mestinon and come back in 4 months to see how it is working. Short term followup is mostly to check if the immune suppression drug has caused other problems and ER if you have difficulties. Rarely do we see the results of treatment sooner than several months.

Good Luck
Russ

"Rarely do we see the results of treatment sooner than several months"

So true and it can take patience, for some, to come to terms with that simple fact. Even worse for many with MG when it can take years if ever to reach a stable situation. Most of us come out the other side relatively unscathed.

No wish to make light of the problems that some on here seem to have in getting treatment and having a good working relationship with their Neurologist. but it is a two-way thing and trust plays a significant part in that. There is also an element of giving control to someone else - that is never easy but, certainly in my experience, necessary at least at the start of the journey and probably for a year or so. By all means, read up, educate yourself and question - but also listen to what you're being told.

What is missing here is a simple fact that MG is a rare disease and if only for that reason, there aren't many Neurologists, let alone Doctors, with the necessary experience to correctly diagnose it. Add to that, commonality of symptoms across the board - it can be difficult.

I had to wait almost 4 months to get into a neuro close to where i live. He was brief and to the point. Back in our little town there are no Neuro's so will be moving. that said i decided to go find me a MD who has been around a bit and that i can go see and ask questions to. Most Doctors should have a clue and if not they can find out.....i hope..lol Thanks god for groups like this where we can get info from others who are going thru the same ordeals.

Neurology is a huge subject and it seems that some neurologists treat a small sliver of the neurology pie. My daughter has one neurologist for migraines and a different one for congenital myasthenia.

Some doctors are not comfortable treating certain combinations of problems. I have a neuro junction disorder plus autonomic neuropathy and there is no neurologist in the closest big town (a 200 mile round trip into another state) who feels comfortable treating me. The autonomic dysfunctrion makes them very uncomfortable. One neurologist finally explained this to me.

There are two ways to approach it when you are having trouble being diagnosed. In the beginning I went to several neurologists and got mis- diagnosed and no real help. I did my research and found a neurologist at the Mayo clinic in Arizona who's research appeared he had an interest in the area in which I seemed to be having problems. .I had to switch regular doctors to get a referral then wait to be accepted as a patient. We have been working together now for 9 years with good collaboration.

You often have to travel to find someone who will hone in on your problems if they are complex. Consider asking about good neurologists that others have been to in your state. It helps to have someone who is up on the latest research since they don't think they have found all the antibodies yet for myasthenia and for sure they haven't in the congenital form and ideas about treatment can change.

I am not sure if you have been diagnosed and are not happy with treatment or if you have not been diagnosed as yet. My best advice is research the doctors including publications to find a good match. Also reach out to other people with similar diagnoses in your state for recommendations.

Good luck with this! I hope you find the help you need.