Well, it's not MG
 

So I have been told. Not MG.

And that's all. No one is the least bit interested or willing to look into what it actually is, then. Not their problem.

No, mine. Oh well. I can't see. I can't breathe. I can't hear right. I can't move without all kinds of problems from tachycardia to vertigo. But I don't have mg. And evidently that's all I need to know.

Thanks for the info and support I got here. But I guess I don't have any reason to keep coming.

I will be sitting on my couch. Forever, evidently.

I am with you all the way, that's the message I received too a couple of weeks ago. It came from a neurologist, who'd tested for only one of the antbodies and who knew nothing of the term 'seronegative'.

My next stop is a rheumatologist, who hopefully knows more about MG than the student neuro did.

And may I say, good for you for saying that you're frustrated. It's good to let that stuff out!

As frustrating as this non-diagnosis is ... you have to keep trying to find out what the heck is going on. It may likely be more than one thing. Is there any possibility you could get to a teaching hospital / clinic where a thorough, objective workup could be done?

I am so sorry this is happening to both of you and hope something positive will happen for you soon.

Hiya,

I am a long time lurker on this site and saw your post this morning. I have also been investigated for MG the jury is still out ( everyone except the neurologists believe I have it).

My ears pricked up when you mentioned tachycardia please take a look at this website http://www.dinet.org/ and this website (part of the same one its a forum) http://forums.dinet.org/

It maybe possible you have postural orthostatic tacycardia syndrome. On the first link its gives you symptoms and tells you how to perform a poor mans tilt table test.

Please have a look and dont give up seraching for a diagnosis. It took me 37 years to get diagnosed with ehlers danlos syndrome a genetic condition that I had so many red flags for I was diagnosed within ten minutes of meeting the rhuematologist and 4 years to be diagnosed with POTS (postural orthostatic tachycardia syndrome).

I hope this helps

Rach

Hello winic1 :)

I don´t think you should leave that quickly! You got here for a reason and when you leave it should be a positive step to another good place. I agree with suev that there can always be a number of things.

Earlier on when I had CFS I also thought I´d be on that couch FOREVER....
In the meanwhile I thought I needed to at least try to exercise in some way and did so by just wiggling my toes to music whilst lying in bed totally and utterly exhausted.

A few years later when myasthenic weakness took over and was at it´s peak I was close to using a wheelchair and having to have someone else brush my teeth for me. (It never happened because I took small rests every 5 seconds with the brushing!!) I never had a fatigable test in the doctors office in all the 4 years I had fatigable weakness! - I did not even know that what I had could be neurological...I was told that I just needed to use the muscles more and then I would be ok.

It was at that moment I realized my health problems were making me go round in circles with doctors and I needed a direct line out.

Like Alice said in another post - it´s not personal......

Although a doctor may have given up on you, you should never give up on yourself....:hug:

Wishing you the best of luck with your line out and finding a doctor that is happy and willing to take on your very unique challenge.....

A

this is not quickly. before december 2009, i had finally been diagnosed with fibromyalgia (which should have been diagnosed more than 20 years before) and related things (like cfs), normal tension glaucoma (which despite its name is the abnormal kind), a separate eye muscle thing, not-ear-related dizziness, migraines. And I had made adjustments to all of it. fine.

then december 2009 an oncoming minivan lost control and came across into our lane about 10 feet in front of our car. lots of injuries. fine. nobody died. (when the first people got to our car, they didn't try to open the door, they didn't call out to us, they wiped the rain off the window and cupped their hands up to it to peer inside, to see if anyone was still alive). christmas in the hospital, away from my kids & husband. fine. had surgery because my arm had turned blue. fine. many things never stopped hurting. no one will listen. fine. adapt. few months later, more problems. go rounds of doctors, locals keep sending me round and round, so go outside--Yale, New York, Boston, NY again. diagnosed after a year, but very un-typical version, not much to do for it that won't make it worse. fine. meanwhile, this adds cardiovascular problems, vertebrobasilar problems, more eye problems, balance problems, breathing problems, dizziness problems, problem problems, you name it, I got it as a problem. No one will do anything but send me to someone else. they don't even care who else, as long as it's someone else, anyone else. What does Dr. X say? Dr. X said what do YOU say? hmmm. Tell Dr. X this. Tell Dr. Y that. Tell Dr. Z this. Dr. X says no he didn't say that (how would you know? you won't talk to him, you all send messages through me), tell him this. Dr Y says hmm, and that's all. Dr. Z says, well what did dr X say? I got a page and a half list of current doctors, and a two page list of former doctors, all from the last 2-1/2 years since we got clobbered.

Come about January this year, I decide enough. Just going round and round in circles between all these doctors, and not a one of them (except ophthalmologist, but he only does eyes) doing me one damn bit of good. decide this is what i got out of this mess, better to spend my very limited energy on adapting and accepting, than going to another useless doctor.

Then, very last day of Jan, or first of Feb, I wake up and right eye keeps dropping shut on me. "weird breathing thing" I've had since accident has been getting worse. (got a lot of "weird --- things" since the accident, weird breathing thing, weird hearing thing, weird dry mouth thing, weird knee thing, ...), but eye dropping shut all on its own is an undeniable thing. Call ophthalmologist. Medical merry go round starts spinning high speed again. go to neurologist. go to emg testing. go to bloodwork. go to endocrinologist. go to cardiologist go to both ophthalmologists. Nothing. Fed up, it's into April by now, finally get told (only when I demand answers, no one even called with results) they don't think it's MG. No word, no attempt, no effort to find out what it IS. Just nope.

fed up. book myself appt at Yale neurologist. wait SEVEN weeks to get in there. now it's June. Tell doc, well, if it's not MG, then what the hell is it? He nods. he appears to listen. he runs the quick squeeze push pull standard tests. he says I dunno eyes, really, I want you to go to neuro-opthalmologist. Nothing more. no looking at the rest of me. only eyes, because to get an appt booked, I needed a referral and ophthalmologist was the guy I got to write me a letter. Go to neuro opth. stupid cranky old fart. just got his report. many many FACTS, off the 8 pages of papers I had to fill out, are wrong. evaluation of my existing eye problems incomplete and wrong, because the guy hardly looked at me, and would not let me talk. didn't even get my eye color right (did you know I have blue eyes? well, neither did I. nor do I.) declares it not MG.

there was a whole lot more, but stupid computer ate it, and I cannot write it over right now. maybe another day. quick summary, i've had it, not one damn doctor has done me any good, and evidently aren't going to, so no more. if i didn't have kids, i wouldn't even care about the apparently increasing chance of dropping dead.

but it is damn clear that no doctor is going to do anything for me. so i am done. fine. it's not mg. it's not anything. it's all my imagination. so me and my imagination are going to put our energy into finding ways to accept living on the couch.

Hi,

I feel your frustration I really do. It seems like you have been dealt a really rotten hand and all of us have times when we feel like enough is enough.

We arent giving up on you here, take some time to re group and re focus - I had to do the same when the drs started telling me that my symptoms including breathing problems - for which I have home oxygen for - were in my head.

Some of your symptoms do sound crazily similar to my own, my sisters and quite a few people I have met on Dinet - the forum and info site I told you about earlier. The problem is many cardiologists do not understand POTS however the site does have a list of Drs who do get it.

Please dont give up

Gentle hugs
Rach:hug:

Really really sorry that you have had SUCH a hard time with your health and you haven´t had a good break.......:(