Annie -

THANK YOU! THANK YOU! I wrote another post before I saw this one.
I will be printing this off and going through it line by line very carefully. Yes, 2 hrs in the hall and praying for my life!
They did do a breathing test and noted variable breathing - the thought in the ER was suspected MG and I was admitted.
My shaking did start when the breathing stopped. My pulse/ox lights were going off like crazy but just dipping a little. HR up and they said that was the concern. The ER doctors gave me ice when I asked for it. I thought it helped. I have documented my face...just last night...it is dramatic. Speech also dramatic. I've ruled out most of the other conditions, thyroid, etc...My breathing is normal now but I take it easy because I'm afraid to over do it and cause another crisis. I will look for a pulmonologist. That is the part that scared me. I was bargaining to God for my life at that point, no joke. But who understood me? I tried to even say I was going to a dark place and was scared. OMG! OMG! You have so totally validated me.
And you are right, its not psychological. Its serious. I knew that. I'm not stable, because I don't have medical help. THANK YOU! and OMG!

Jennifer,

Sorry to hear that you got the old "it's in your head" run around. I received much the same when I was in the hospital back in June. Even after the psych consult said it definitely was not in my head, the young neuro still diagnosed me with conversion disorder and told me to follow up with a psychiatrist. I did as he asked just in case there was something going on that I wasn't aware of. A psychiatrist, who I knew well from when I was younger and who had helped me deal with some teenage depression, reassured me that it wasn't in my head and that I needed to get second opinions. My cousin who is a surgeon said the neuro "turfed me", meaning that he just didn't want to deal with me. Probably for the better I guess, because other doctors I am following up with are much more understanding and appear to be more competent.

After an experienced optometrist looked at my eyes (double vision and ptosis) she immediately referred me to a neuro-opthomoligts and a MG neuro-muscular specialist. Anxious for my appointments but hopefully on the right track.

Please don't let the awful way you were treated drive you away from pursuing other avenues.

Annie - thanks for the great PDFs. I agree with you that I was most bothered by the notion that Jennifer was left alone during a respiratory incidence. I did EMT training many years ago, and this is a clear screw up.

Good Luck,
-Willie

Hello Jennifer :)

I´m just passing through and adding a tiny little piece to your thread.....

In January after having had symptoms for many years and negative tests I had an appointment with the head of neurology at my local hospital. I´ve had a few horrible experiences there at that hospital and vowed that the only time I would ever go back again was if 1) I arrived there unconscious by ambulance 2) I arrived there by helicopter, or 3) I was there to visit a relative or friend.

Then I realized that yes that was OK whilst I was actually feeling quite well recently - but thinking realistically, if things get worse I do have a very young son who does actually need his mother :)......

Today I went to a doctor who considered the symptoms I had during a recent flare up as quite serious.... (for example....bending my chin down to my chest in order to swallow) And in addition, we were actually able to discuss many of the issues normally discussed on forums together at the doctor´s own initiation.....It was a doctor that was very different to many I have previously encountered, and one that wanted to make a plan for me.

I hope in one way that your test is positive, and you can get a good neuro or one with a´difference´. Until then, you will have lots of support here :)


All the best to you....


Anacrusis

"...I´ve had a few horrible experiences there at that hospital and vowed that the only time I would ever go back again was if 1) I arrived there unconscious by ambulance 2) I arrived there by helicopter..."
:D:D:D

Made appointment with ophthalmologist for tomorrow. He saw me for double vision a year ago, but I didn't have symptoms at the time of visit. We don't have a neuro-ophthalmologist near by, but I'm hoping for a referral. My eyelid droop is pretty obvious.
Thanks for that suggestion!

Saw ophthalmologist today. His response was, "OMG! Nobody is treating you for this? You need help right away!" I told him this was me feeling much better. His response was very validating.

He saw my double vision (my eyes, especially the left is pretty bonkers right now), ptosis, slurred speech, and weak neck muscles. His diagnosis was Myasthenia Gravis. He said its pretty obvious when you see it. Is this true? I thought so, but now a doctor is telling me this.

He called the neurologist and told her his findings. My appointment was bumped to next Wednesday instead of the end of the month.

Step in the right direction...wish me luck!

Thank you all again for your support!!!! I wouldn't have gone to the eye doctor if it hadn't been suggested.

Ophthalmologist to the rescue once again! I've read that story many times here.

Abby

Jennifer, This is excellent news. :) We can all appreciate your sense of relief.

Your post with regard to Dr. Lum-barb :D as we refer to him, created quite a stir here; the discussion is ongoing. These are incidences--unfortunately yours is not the first-- that need to be addressed not only at MG Conferences, but with medical students, as well.

I have an important question, if you are willing. Given the stressful situation, I appreciate that you might not be able to remember.

Can you recall what precipitated the doctor's comment, re: the lumbar puncture? For example, did you, or say, your husband, ask that you be admitted? Did the doctor say there weren't any beds? Even if you aren't positive, Jennifer, we would appreciate anything that you can add to this.

Thank you!

Update:

Hello all! Once again I'm appreciative of your support. Again, I'm writing for support and also maybe my story will shine light for others.

I went to the neurologist today.

I was hoping for clear answers. Didn't get any.

I have to admit that I was very nervous going in and some of my symptoms were clearly from nerves. For example, my eyelids would close and I couldn't open them, then they were open after I relaxed. She said that wasn't MG. Also, towards the end of the appointment when I was relaxing from the nerves, my eyelid symptoms went away. I've heard from others that stress can affect MG, but the neurologist said they are lasting symptoms and don't just go away. Maybe that's true.

So while I may have something underlying my weakness like MG, I am certain that I also have stress or anxiety related symptoms.

The neurologist was kind. She is doing more blood work for MG, apparently the hospital didn't do the Acetylcholine Modulating AB, Blocking AB, or Binding AB; and she scheduled an EEG. She did not see the ophthalmologist report but had to go on what she was seeing, which she said wasn't typical MG. If the tests are negative and I still have symptoms she said we can try meds. And/or, maybe its psychogenic or maybe I need to go to a larger hospital for a work-up. So, at least she was keeping an open mind. I truly appreciate that much.

I did mention the breathing issue and she said she wasn't comfortable telling me to relax through it and I should seek medical attention if that happens again.

What the neuro said wasn't what I thought I would hear after the ophthalmologist visit. I was relieved when the OD told me he thought is was MG, but in another way I was wondering if it were possible to have double vision, eyelids drooping, weak neck muscles, and bulbar symptoms caused by something psychological. I'm glad the neurologist taking a more cautious approach before just giving me meds because I'm not sure I'm convinced this isn't psychological. At least today I'm not sure. It is a bit of a roller coaster ride.

I have to admit, I was stuck on the social stigma of maybe being "crazy" or "all in my head". And really hoping to discredit a couple of MD's who's bedside manor was deplorable. Wouldn't that be sweet?

Honestly, I don't think psychological disorders are "made up" anyway. Its real too. Nothing wrong with getting help for that.

It's hard to keep an open mind. To play my own devil's advocate: I won't rule out that I may have anxiety and depression NOW that I had a lousy hospital experience and went through such severe weakness and apparent breathing trouble without a definite cause, too.

Thanks for listening.

Jennifer,

Sorry you didn't get the clear answer you were hoping for, unfortunately neuromuscular issues (and any related pscyhco-geneic or psychosomatic aspects) are not easily nailed down and physicians often disagree about diagnoses. This is particularly the case in the early stages.

Obviously I can't tell you if it is MG, sounds like some of what you are describing as symptoms align with MG, but some aspects don't. You are totally correct that stress and anxiety can interact with organic aspects of an underlying disease. This of course makes it more challenging to determine what is going on and how symptoms should be attributed.

Keeping searching for answers, and I am glad you found a neurologist who is open to working with you.

-Willie