I just got my book but havent gotten into it. Too sick and vision worse.

AnnieB3 I did skim your excerpt. The piece about missing record segments reminded me of trying to get my birth records for my youngest daughter. I beleive she was not breathing when she was born, in some real distress.I know for a fact that I was torn from stem to stern thanks to his way to generous use of pitocin to get him done with me. I asked to see her becaue I heard nothing. I actually begged fianlly. I was refused. They took me to my room and expected me to sleep not knowing if my little girl was all right! I was there a long time being sewn up and never heard any baby sounds. There was alot of activity around her too. Well I had my payback so to speeak. When the doc came early the next morn to tie my tubes I said NO. Honestly I wasnt gonna let that guy touch me again and I told the nurse that.

When I requested this record it was missing.

After I moved to where I am now I discovered taht he had left town, that doc, after a bunck of lawsuits. I think this is why my daughter has Epilepsy.

Annie59

Just wanted to bring this thread forward for Mycha's mom

I am glad that you shared this. I have been always a happy person that loves life even when things are not going right and I have always been physical but I know when something different is going on in my body and there is no way I am causing it. I hate not being in control of my own life. So I can really relate with this book even though her symptoms are worse than mine. I can not imagine someone in that shape being told it is in your head. That would send someone in depression.

Sandy,

Thank you for bringing this thread forward for me. I just went and previewed the book on Amazon and reading the preview portions is like observing my daughter. My daughter too is nearly quadrapeligic and told it's psychiatric.

Right now Johns Hopkins and Duke are both reviewing the 70 pages of tests and med records they requested to see if they believe they can be beneficial in evaluating/treating Mycha.

Just praying.

Mina Hansen

I really hope she gets the help she needs. She has the antibodies. That is a diagnosis.

I was told by multiple doctors that I was a poster child for depression to which I replied, "I wasn't aware that depression causes double vision and slurred speech".

One physician and friend of family (in fairness he doesn't specialize in MG) was so adamant that this was all in my head that he challenged me by saying, "well prove it to me and just try an SSRI". I left there feeling so outraged I thought I was going to explode or implode - either would do.

I collected myself and told him at a later date that his assessment couldn't have been further off and his hubris was deplorable. He surprised me and apologized.

Like most of you, a dx for me was much better than the madness of living in fear and uncertainty. For all the undiagnosed patients out there, I send you extra positive energy and hope for answers.

Thank you - we have order this book and I hope it has information that can help us undo this quagmire we've found ourselves in.

Mina Hansen

How were you able to finally get a doctor to believe that this wasn't just "all in your head" (ie depression)? And where did you finally find adequate/appropriate treatement?

Thanks,
Mina Hansen

Mina -

My best weapon was my iphone. I started recording every flare...every time my ptosis kicked in which is VERY remarkable I was sure to document. I recorded my slurred speech and my labored breathing.

This, for me, was the big turning point where my drs were like, "Oh, ok this is clear evidence" (still not sure why any dr would think we are dreaming up symptoms?!! Slurred speech/droopy lids are so sexy that of course I'd want to exaggerate that.... )

I also cut ties w any dr that seemed unimpressed and tossed them in the "useless dr bin".

Good luck.

PS Mina I had the worst exp at MG/MDA clinic and much better success w a "regular" neuro.