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Charcot-Marie-Tooth/Lupus/Addison's Disease/HELP MY MOTHER
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Charcot-Marie-Tooth/Lupus/Addison's Disease/HELP MY MOTHER

1. My mother has a disease known as Lupus.

It is not fun. Trust me. I've lived with her having it for a long time. It's supposedly incurable. But I don't believe that.

2. She also has been diagnosed with something called Charcot-Marie-Tooth disease.

http://en.wikipedia.org/wiki/Charcot_marie_tooth

Also known as muscular dystrophy, it is a very painful disease.

3. She has also been diagnosed with Addison's Disease.

http://en.wikipedia.org/wiki/Addison%27s_Disease

She acquired this disease from trying to get off of medication she was given for her Lupus. God has a horrible sense of humor.

Now then, my introduction is complete. All of the above are supposedly incurable. It's not true. It can't be true. My mother has wasted, literally, DECAYED in front her her entire family since I was young. It's no longer something I can do, nor something I can deal with.

The diseases have torn our family apart. My mother is so mentally/physically altered that she often stumbles her speech, can't remember things...it's as if she's wasting away into nothing.

Nowadays, nothing is happening to change this fact. Sure, we go to hospitals, emergency rooms, wards of ALL kind. We've talked to so many doctors, I don't remember all of them. We have so many medications in our house, we could start a pharmacy. NO DOCTOR is helping her. NO DOCTOR is giving her information.

I need help. I need a revolutionary, miracle-working doctor. I need a great, expensive institution or hospital. Money is not a factor.

I WILL PAY REWARD MONEY. PLEASE HELP ME.

***@**** EMAIL ME
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3 Comments Post a Comment
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Avatar n tn
Hi,

Your post is so heartbreaking :(  Did your mom have lupus/CMT since she was young or when did she develop these?  Addison's seems controlable through meds.

I wish I had some answers, but my only advice is for you to research these diseases and then look for specialists in the country or abroad.  Money cannot cure anyone, but it can afford you a lot of comfort.  Best of luck.
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125112 tn?1217277462
I am genuinely sorry to hear of your mother's & family experience with this. My heart goes out to you.

Auto-immune disorders; those who suffer from one- have a higher incidence of gaining another disorder. Woman are more likely to develope an auto-immune disorder than men.

I might look up a site that deals with auto-immune disorders specifically, contact them and ask if they know of a good place to be seen by those who suffer from more than one disorder.

To check for drug interactions: http://www.drugdigest.org/DD/Interaction/ChooseDrugs/1,4109,,00.html
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125112 tn?1217277462
As an addition:

Best ranked hospitals for Rheumatology:
http://www.usnews.com/usnews/health/best-hospitals/rankings/specreprheu.htm

Discovery May Lead to Novel Treatments for Autoimmune and Chronic Inflammatory Diseases
http://www.hss.edu/newsroom_15391.asp

Message board for Lupus. Perhaps other patients there, can offer you assistance:
http://www.uklupus.co.uk/
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