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.
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.
Copyright 1994-2016 MedHelp International. All rights reserved.
MedHelp is a division of Aptus Health.
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.