NeuroTalk Support Groups - Thanks all and...

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Thanks all and...

Thanks to everyone that has responded. And I did not realize it would help this much to post my own problems. I have read posts off and on for awhile but have not posted. Mostly cuz I am too tired, cant see straight, or pc acts up. But I thank you all for knowing I can post and ppl will understand what I am going through. :grouphug:

It has helped a lot to learn that a lot of ppl go through the its all in your head run around. I have been convinced I have MG since my original dx 5 years ago. But I just got the "official" dx, finally positive antibodies. I was told anything from I had severe fibromyalgia that caused my weakness to you have some disease that your body shuts down when in extreme pain(sorry brain fart, cant remember what they called it.) So I really understand those that are very frustrated with docs. I have changed my GP 4 times in 5 years and seen 4 neuros. And countless other specialists. I thought I was odd, docs actually say I am an anomoly, because of my very strange combo of diseases, and sensitivities. But after reading about others I think I am just odd for the small community I l ive in.

Just wanted to add a very small vent, I promise. I called my neuro yesterday to confirm about my plasmapheresis before my surgery. This is the first one I have ever had by the way(plasma). And they informed me that they wanted me to stay in the hospital the whole week before surgery while having it done. That will be in two weeks! Um hello I have 3 kids, I am divorced. My ex, the kids' dad, is a long haul truck driver so he is not gonna be any help with the kids. Thankfully I live with my mom and boyfriend. But they both work and we did not know this was the plan til yesterday! Anyway just had to vent that.

Hi Momma3love

Wow, you really dont need all this extra stress at this already stressful time!

I hope you sort something out, this sounds woefully inadequate of me I know, but I don't know what else to say.
I live on my own, so I'm lucky when I'm sick, I only have me to look after, I can't imagine what it would be like to have 3 children to look after as well.

take care, and let us know how things go, and keep venting, it helps as usually one of us have been through something similar.

Have you got it lined out yet?

Sorry,
I am bouncing between this forum and the PN due to a possible new DX explaining my "other" set of symptoms and I've been a little too wrapped up in myself I think :winky:. It's wonderful you are going to get going - let the healing begin! :D

Sometimes I just scratch my head at how some offices run. Looking at all the posts I see where people are given their dx, some pills, a follow up months away and sent packing. This is definately one disease that patients need to be educated on. Our personal actions have so much to do with our recovery!

Then to have these people assume that you would have any idea about how the PE works is rediculous, but I've seen it over and over. In fairness to your doctor's office and in the interest of having them work on their shortcomings in the future, I think you should call the doc preferrably, or the office manager (although that may not get the action needed) to suggest that this was some vital information that you needed as far in advance as possible to make arrangements.

Unfortunately, though, you will need to learn to ask lots and lots of questions every step of the way to make sure you get all the information YOU NEED. Don't forget, you hired this doctor and they work for you. They're being paid well enough for you to expect EXCELLENT customer service!

Congrats again, and let us know how everything goes. :grouphug:

Quote:

Originally Posted by momma3love (Post 486596)