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.
Also known as muscular dystrophy, it is a very painful disease.
3. She has also been diagnosed with Addison's 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.
Desperate - it's almost unbelievable that she has all three diseases. It sounds like she has an autoimmune disorder, and the physicians can't quite agree on what it is.
Why did she get off the medication she was on for Lupus? My dearest friend has Lupus, and she declined to take a drug - I forget the name - because once you take it, you have to take it forever. I bet it's the same drug. Why is your mother not still on it?
Has she ever lived anywhere else? Since she was diagnosed, has she moved to a completely different location? There is something to that. My friend lived one place, and she wasted here, and was diagnosed with Lupus and was skin and bones and she could barely walk, and ODDLY, her collie was also diagnosed with Lupus. What are the odds of that? I think very very slim.
She moved to California because here husband changed jobs, and over the period of about 3 years, she recovered. She has gained back about 30 pounds (she was a skeleton when she left here) and looks like her old self.
I don't know if it's a coincidence. I think there was something - WHATEVER it was, here that was making her sick.
Best wishes for your mother. Autoimmune disorders are demons.
Hey, I don't know much about the diseases, but Ive heard alot of people talk about John Hopkins hospitals. They are supposed to be hard to get into, but if you have money, it helps you get in faster. Ive heard this from a couple people that say they specialize in certain diseases. Heres the address I found on the internet. http://www.hopkinsmedicine.org/ Good luck and stay strong!!
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