Forgive me for saying this, but are you sure you have myasthenia?

I am not suggesting that your symptoms are caused by "emotional problems", but by some other medical problem which they may be missing because you are so convinced of having MG.

I may be wrong, but it seems to me that you come to your physicians telling them that you know what your illness is and you know better than them what tests have to be done and how they should diagnose it.

You create for them a very easy yes and no situation- MG or not MG.

It is true that MG is many times not an easy to diagnose disease and patients with MG are sometimes not diagnosed properly for many years. But, this does not mean that every patient who has an unusual and hard to diagnose illness has MG.

Why not take a different approach. consult a good non-specialist well-rounded neurologist. Some one who is interested in thinking what your illness is and has a broad/open-minded thinking.

You mention that your illness started at an early age, you have some abnormal blood tests which do not fit with MG, you describe breathing difficulties with relatively normal respiratory tests. Someone has to put all this together and not just say if you do or do not have MG, but what illness you do have causing this.

I just noticed that you mentioned having Polyglandular autoimmune syndrome. Which type? Are you being followed by a good endocrinologist?

Hi Alice,

I definitely see your point. I've already repeatedly encountered the framed Yes vs No response to whether I have MG. It's happened where they forego testing & base their 'diagnosis' on my appearance or testing is done incorrectly, which leads to comments like,"You don't have MG, you're fine so you should be happy."

I'm not sure at all whether this is MG (or LEMS). Since they're highly suspect (especially due to the Polyglandular Autoimmune Syndrome and responses to Mestinon & Tensilon), I want the neuro to eliminate them as possibilities before searching for answers under other unturned stones or falling back onto the psychosomatic sword. As we've discussed on the boards, faulty testing methodology leads to faulty test results, so if they're going to eliminate MG as a possibility, I want to make sure they adhere to testing for it in a way to pick up on positive results if they're there.

I mentioned to Anacrusis earlier in the thread that I really want a neurologist who excels at communication & is engaged in helping me find answers. I would love to find a neurologist like that & work with them. I'm not married to the idea of having MG or LEMS. My primary focus is to get this identified & treated so I can hopefully start feeling better.

So we'll see where this lands.

Alice, I don't yet have an endocrinologist. I first had chronic hives 13 years ago (head to toe, 3-4 times a day for nine months), it's in remission. I developed vitiligo around the same time, mild until deciding to make its appearance more prominent about four years ago. The Hashimoto's Thyroiditis was diagnosed this spring (2012). Only when researching the cropped up mystery symptoms of ptosis, generalized weakness, etc did I come across rare disease info stating chronic urticaria + vitiligo + Hashimoto's = PAS Type 3C. (Note, my mom also had PAS.)

All I need is to go to a doctor saying I predict a diagnosis of MG, and I self-labeled PAS while I was at it based on cyber research. There's no way I would be heard or escape a label of cyberchondriac. So I've put the PAS on the back burner while I search out a neuro. Then, I deal with getting an endocrinologist and finding if there are other glandular failures & whether adrenals are involved to make it not Type 3C. Then, I deal with my teeth (I still have three loosened crowns & loosened teeth from when all these symptoms started this fall.) And hopefully, before all of that, I'll have figured a way to get more pennies in my pocketbook. My Flex spending and ex-boyfriend presently are keeping me afloat.

I personally think you should go to an endocrinologist.

First, endocrinologists are internists. So, they don't go so easily into the DSM route and are less focused on one system.

Second, You already have a proven endocrine disorder and a family history of one. So, it makes perfect sense to consult an endo.

BTW, it was an endocrinologist who first thought I have MG. He put together my recently diagnosed " asthma", my significant weight loss and the mild difficulties I started having in climbing steps and doing more strenuous activities I could easily do before. He thought the mildly abnormal thyroid test results I consulted him for were not significant and did not explain any of my symptoms.

Alright, I'm sold. I hate to put another ball in the air, but this MG/LEMS/mystery ailment diagnosis has dragged out longer than anticipated.

I'll start researching endocrinologists today. Thanks for the guidance.

I'm really sorry to hear that he was a jackbutt One of the most discouraging things out there. I've had a few. Even my neuromuscular dr that I see, (and is my #1 guy we go to), when I first met him, I wasn't sure about him either. He was very "yes, no" answers type of guy, wanted to know when every thing started at the exact date, exact time. He didn't come off very friendly at first, and my family and I (my parents were with me) weren't sure what to make of him after that visit. The 2nd visit came, and he was a bit warmer, but he seems to like me a bit because I am young and an interesting patient (being 26, having these symptoms etc and he mostly works with elderly ALS patients), and because we found a similar interest between each other so there's kinda something else to talk about.


We did go in there saying that we had very strong feelings that it was MG, but we also had reference from the local neurologist to back that up our pre-diagnoses.


Hope you find another one who's a bit more personable

Ah, sometimes I think most of them (neurologists) are just kind of "funny".
I've seen many, many specialist. I've been to at least one doc every specialism.
And well, not to generalize of course, but they just always seem to be a bit strange in their contact wit patients, kind of like they lack some kind of social skills.
This is just my experience, but my reumatologists never say: "oh you look all bloated" and make a sound to indicate my moonface "PFFFRRRT" when I show myself after starting prednisone. My haematologist or endocrinologist accept that I'm not just a random patient who lies there and waits for god-in-white-coat-almighty to do something, but that I want to be involved. Two neurologists talking about me, and use stuff like "globulines" and "melanoma" smile and say "Just look the other way, we're talking difficult stuff here. It's jibberish for you".

Not to generalize, there must be some non autistic out there.

Good luck with an enocrinologist! I know the best, he is fantastic, my best doc ever. He's not in the US though, sorry.

Ravenclaw, do you have LEMS?

We've got a holistic pharmacy in town, so I reached out to them for a list of alternative-minded MD's with various specialities. I'm going to try my luck with a neurologist from that list. In my experience, the alternative-minded doctors often will have a better bedside manner, be more communicative and take more time explaining things. We'll see how it goes,.. the neurologist I chose from the list gets excellent online reviews from his patients. Fingers crossed I can see him within a reasonable time period.

I'm not as impressed by the endocrinologists on the pharmacy's list but I set an appointment with one that's hopefully promising. If I don't have luck, maybe I'll fly to where you are and visit yours. I'm overdue for a vacation. Can I leave my body behind?

You know I think you may be onto something with the POTS/dysautonomia. I have that as well and it can be VERY debilitating, AND mestinon is the treatment for it, so you would feel better with mestinon! Your breathing symptoms and chest pain actually do sound a lot like my dysautonomia symptoms...and I have it as part of small fiber neuropathy, which causes me a lot of loss of feeling in my fingers, and feet as well. It makes me off balance. It's very hard to walk up stairs without being out of breath and getting bad chest pain if I haven't taken mestinon, but it's the dysautonomia causing that part, not the MG. The symptoms are different. I'd make an appt for a tilt table test and autonomic workup. POTS can be very, very incapacitating.