NeuroTalk Support Groups - When is it enough?

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When is it enough?

I have been going over blood work results because one doctor was worried about a low copper level and I was trying to find anything else to back it up. One of my other doctors actuall wants me to become a doctor since I'm begining to understand all of this from going through it all.

So anyway it looks like they are now watching for Wilson's Disease. Which would explain some of my symptoms, some that I have never listed as a symptom because I just thought everyone has a problem with it to some degree. But it wouldn't take away the MS diagnosis or the POTS diagnosis.

Oh and it still wouldn't explain my weak spells, so then we are still looking at some kind of neuromuscular disease (possibly MG, which would be why I came here in the first place). Are they ever going to quit finding new things with me? I'm so sick of adding to my list of diseases.

Okay sorry for whinning, just had to get that out. Wilson's is treatable through medicine and diet. But it would meen I have to give up nuts and CHOCOLATE! What a crime.:eek::wink: They say that after initial treatment they may be okay occasionally, but I don't think that meens at least twice a week.:winky:

Oh and they say to not eat organ meat or shellfish, but that's okay I've been on that diet my whole life.:p

I hope everyone is having a good day, talk to ya later.

Kristie

Oh, Kristie - I'm sorry

Have they or are they doing some follow up tests? Do you have Wilson's in your family? Will they do DNA tests?

I'm here for you, if you need to bounce ideas, need help researching or whatever else I can do - wish I could be there to give you a BIG HUG!!
but I guess this has to do :hug: :hug: :hug: :hug: .

Talk to you soon.:circlelove:

Quote:

Originally Posted by nemsmom (Post 488903)

So do you have high copper levels? Do you have hyperpigmentation too? Did they check your iron and all - hemochromotosis as well?
Just a thought, as that is more common.

Oh, honey I am so sorry you are having to go through this.........

I know this may sound silly, but what is Wilson's disease?

How are you handling this? Are you OK?

I am sending big hugs and prayers your way!

:hug:Erin:hug:

Quote:

Originally Posted by nemsmom (Post 488903)

I am doing some more research on my own with past lab work and other tests. I will ask the doctors to do more once I see if they haven't already run the neccesary tests.

Wilson's Disease is when the body doesn't process copper properly and it build up in certain body tissues.

They typically treat it with medication and diet. I'm doing just fine and starting to burry myself in the research any chance I get. My specialists are all taking a wait and see aproach and I will be researching during that time. I have so many tests to go from if I just find some things that could fit I will ask the doctors about them.

I'm keeping a symptom journal and trying my best not to over do it. Thank you all for your support, I was just upset at the thought of not being able to have chocolate anymore.:p Now it's starting to make more sense and I'm off to do more research.

Kristie

Quote:

Originally Posted by erinhermes (Post 489182)