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Unread 04-13-2012, 01:57 PM   #1
Agirlandhertort1
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Confused Doctor vent and questions

I was laid off from work in October, following what was diagnosed as a stroke (even though MRI and other testing was negative). Due to the nature of the work, the regulations state that I am unable to continue that type of work.

That said, I have been looking for work for months now, and have gone on several interviews but have had no offers yet. Well, yesterday I had an interview, and would you believe that my darned eye started drooping while I was dressing for the interview ? I was so upset, but grateful that I was recently given glasses, because they hide the dis-figuration a bit.

The neurologist had called while I was away, and told me that they wanted to start me on an antidepressant (3rd time now). I don't know why he won't listen, and he seems to think that I'm nuts even though I look visually different! The only thing making me nuts is his ignorance

I called back and demanded that he do bloodwork for MG. He mentioned it at the last visit (due to my eye droop issues and complaints of fatigue) but did not suggest testing. The nurse called and said that I can get the bloodwork next week (yea)!

If it comes back negative, at least I can rule it out. I need a doctor who takes me seriously, because nobody is going to hire me with these issues! How does he expect me to live a "normal" life when I sometimes look and feel anything but?

Sorry for the downer thread, I'm just so frustrated with my body and these doctors. What were some of your earliest symptoms? What made your doctor's decide to test for MG, and what other tests had they done?
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Unread 04-13-2012, 02:34 PM   #2
Jo*mar
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Were you laid off because of the diagnosis of stroke?
There might be some legal employment issues regarding that.
I'm not sure. If a larger business the HR dept should have been helpful...
How long had you worked there?

It seems like it could have been done as a medical leave of absence??
At least until the dx is official or a second opinion saying it is true or not true?

If the stroke dx gets cleared up as not a factor could you return to that job? Would a MG dx still affect that job & requirements?

Are you getting unemployment monies since it was a lay off?

You might be able to get temporary disability payments, but I don't know which pays out best temp disability $$ vs unemployment $$..

You might ask about temp/disability info on our Social Security Disability forum.
http://neurotalk.psychcentral.com/forum28.html

Or maybe the members here have gone thru similar things.
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Unread 04-13-2012, 02:42 PM   #3
Stellatum
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Hi. I'm so sorry you're going through this. For me, not being diagnosed was a terrible emotional strain.

If your blood test comes back negative, don't rule out myasthenia gravis. There are a lot of us here with negative blood tests. It's pretty common. I've seen different numbers for "seronegative MG," up to 20%, but I believe the real number is higher. Some people who test negative for the most common antibody test positive for one of the others. And some people never test positive at all (like me).

If your blood test comes back positive, that's a diagnosis. But if it comes back negative, you need more tests. One of the tests is called a "single fiber EMG" (SFEMG), and it's more accurate than the blood test, but not all neurologists can do this test.

Please keep in touch here, and I hope you get some clear answers soon!

Abby
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Unread 04-15-2012, 11:20 PM   #4
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Abby is absolutely spot on. I have never tested positive for antibodies...and didn't flunk the SFEMG (although I was 'borderline'). But I respond beautifully to Mestinon - - and a non-MG'r would never be able to do that!!

Pls let us know how your test results come out - - but don't think you don't have MG if the test comes back negative. You still may (or may not!) MG can be such a weird and petulant companion!!
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Unread 04-16-2012, 03:56 AM   #5
Agirlandhertort1
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Thank you all for your responses!

Due to the nature of the work, it is federally regulated and their rules state that I am to be out of work for at least a year. The hospital gave me the stroke dx because I had visual disturbances the day of the episode, and also some brain fog. My MRI and echo were both negative, so it truly was a diagnosis of elimination.

If I got a different diagnosis, I would be able to return to work, but of course I am seeking appropriate treatment because I want to return safely.

I also worry about starting a new job and having an eye droop episode. A little bit about me: I am a 32 year-old mother of 3, and I already have a diagnosed heart condition (that took almost a decade to get).

I hate feeling ignored or being told I'm just depressed by the doctor. I do not invite these episodes, and I find them extremely embarrassing. I also tend to drop things, and I recently fell down the stairs with my baby, which was really scary since I don't remember tripping. One minute I was headed down, and the next I was at the bottom trying to figure out what just happened. I just want to feel young again, and in control of my body!

Is there anything else (besides Bell's Palsy which has already been ruled out) that can make eyes droop?
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Unread 04-16-2012, 08:32 AM   #6
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A droopy eyelid is called "ptosis." You can Google ptosis and find out about the causes.

Your heart condition doesn't happen to be Long QT syndrome, does it?

Tatia
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Unread 04-29-2012, 02:09 PM   #7
Anacrusis
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Quote:
Originally Posted by Agirlandhertort1 View Post
I hate feeling ignored or being told I'm just depressed by the doctor.
Hi...Totally understand the frustration. I don´t have a single positive test and my experience with doctors felt like a comic strip in medicine until I found a neurologist that actually made a fine art of it ☺ ………......

DIAGNOSIS May 2010: M.E
DIAGNOSIS January 2011: Chronic fatigue
DIAGNOSIS February 2011: Psychosomatic something or other
DIAGNOSIS March 2011: Fibromyalgia
DIAGNOSIS April 2011: Suspected lyme disease
DIAGNOSIS May 2011: Psychosomatic fatigue syndrome
DIAGNOSIS Sept 2011: Suspected Myasthenia Gravis
DIAGNOSIS Oct 2011: Seronegative Myasthenia

Whilst my trunk muscles were weakening as the evening progressed I would start to fall forwards into my dinner plate and have less and less power to cut through the food and I enjoyed those first few bites so much because I knew at any minute the chewing would stop. Well the doctor seemed more worried about my eating habits than my muscles!! And a doctor´s assistant once even suggested I was just going through an early menopause…..and so on......

Look forward to read good news about all those procedures hopefully sometime very soon ☺
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Unread 05-04-2012, 01:08 AM   #8
Agirlandhertort1
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Quote:
Originally Posted by Anacrusis View Post
Hi...Totally understand the frustration. I don´t have a single positive test and my experience with doctors felt like a comic strip in medicine until I found a neurologist that actually made a fine art of it ☺ ………......

DIAGNOSIS May 2010: M.E
DIAGNOSIS January 2011: Chronic fatigue
DIAGNOSIS February 2011: Psychosomatic something or other
DIAGNOSIS March 2011: Fibromyalgia
DIAGNOSIS April 2011: Suspected lyme disease
DIAGNOSIS May 2011: Psychosomatic fatigue syndrome
DIAGNOSIS Sept 2011: Suspected Myasthenia Gravis
DIAGNOSIS Oct 2011: Seronegative Myasthenia

Whilst my trunk muscles were weakening as the evening progressed I would start to fall forwards into my dinner plate and have less and less power to cut through the food and I enjoyed those first few bites so much because I knew at any minute the chewing would stop. Well the doctor seemed more worried about my eating habits than my muscles!! And a doctor´s assistant once even suggested I was just going through an early menopause…..and so on......

Look forward to read good news about all those procedures hopefully sometime very soon ☺
Thank you so much for your kind words. Would you believe that I actually asked my husband if he thought I was crazy? I guess if you hear it enough you begin to second guess yourself.

I went through years of false diagnosis with my heart condition, until I stumbled upon a cardiologist who was actually thoughtful and good. I didn't even want to go to the appointment, but I'm glad I did.

In all honesty, my symptoms seem to align more with MS than MG, but the eye droop cannot be ignored. I would love it if a neuro could confirm that my stroke was related to a disease instead. So much was taken from me due to that diagnosis. Does MG cause brain fog? I don't know if I experience true weakness, as my legs sometimes buckle when standing, and I don't know if that is something any of you experience.

Whatever the case, I meet my new neurologist in 2 weeks, and I am praying that I can get answers.
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Unread 05-04-2012, 04:12 AM   #9
Anacrusis
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Quote:
Originally Posted by Agirlandhertort1 View Post
So much was taken from me due to that diagnosis.
I don't know if I experience true weakness,
I know quite a good deal about weakness as there was a time where I had CFS and myasthenic weakness overlapping each other and then they separated. And BOY is there a difference! I also previously have had 2 years of severe brain fog which was remedied with whey protein as was the generalized muscle fatigue. But I´ll try to contact you with my info directly. Good luck in two weeks...sounds like it´s your turn now
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Unread 05-09-2012, 08:57 PM   #10
TexasRose
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To clarify, you took whey protein and it helped with your muscle weakness?
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