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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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5 Comments Post a Comment
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Avatar_n_tn
I am so sorry for all that you and your family have been through. I would just recommend getting second opinions or just don't leave the Dr office until you are happy with there answer.

Good luck
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Avatar_n_tn
Kennedy Krieger Institute is affiliated with Johns Hopkins in Baltimore.  They deal alot with the dystrophy-based diseases and run clinical trials all the time.

If you go to their website, don't put alot of weight on the fact that it seems centered around children and adolescents.  They do deal with adult patients also...

http://www.kennedykrieger.org/kki_2nd_inside.jsp?pid=3


Addison's can usually be controlled with a regiment of corticosteriods.  Good luck!
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Avatar_n_tn
Seek the #1 physician, and that is Jesus.  My mother was also diagnosed with Lupus which leads to the deterioration of many other parts of the body as it fights against your own immune system.  This caused signs of Addison's disease as well, but she has found Christ, and it has literally changed her life.  She prays, meditates, attends church regularly, studies the word, and most of all she has faith in God!  Praise God, she used to get emotional and was literally deteriorating in front of us with her muscle weakness, excrutiating pain, mood swings, memory loss, depression, fatigue, feet cramping, hair loss, skin pigmentation, etc but now she is doing well.  She changed her way of living, by putting God first and eating and living right.  Tell your mother to stay away from fatty foods, fried foods, caffeine, flour products as it can have a bad effect.  She can take injections or tablets weekly for Addison's disease, which really helps.  Most of all, seek the help of the Lord (you have nothing else to lose, all you have to do is seek and you shall find).  God Bless You!
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Avatar_m_tn
I am sorry for your frustration.  You need to look for an alternative health provider who specializes in auto immune diseases.  There is a great body of information on helping these people.  Cure, no.  Once the body has "turned against itself" aka auto immune disease you can not cure it.  However, you can control the physiology of the immune system and make that persons quality of life a whole lot better.  Albeit they will have good and bad days.  I am a Chiropractic Physician, one of those "Oh" Dr's.  I have a significant education in treating the human physiology.  As our food source gets more contaminated our our environment more polluted we will see more and more auto immune diseases and Western Medicine, although they do have their place, can only treat auto immune disease by using steroids.  Suppress the immune system at all costs.  This only makes things worse but when you treat the symptoms and not the physiology this is what you get.
Good Luck
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Avatar_f_tn
I'm so sorry for your family's pain.  I looked at your profile to see where you live.  I live in Dallas, Texas.  I to suffered for about two years no doctors could tell me what was wrong or what to do. They began to look at me like I was crazy. I was passed to seven doctors and admitted myself to the ER on three different occasions.  Finally the last go around they sent me to Dr. Scott Zashin he is certified in Internal Medicin and he is also certified in Rheumatology. Dr. Zashin changed my life. I am now a normal person after seeing him for only two months.  This doctor does not give up, he has the best bed side mannor that I have ever seen. I hate to say that I have no trust in Doctors but I don't. Dr Zashin has my trust he is  by far the best Doctor I have ever gone to, he was not coverd by my insurance however I continue to pay to see him until I could change to a PPO plan.  He checked me for Addison's.  If at all possible I hope that you can go to Dr. Zashin he is rated #1 in Dallas by D Magazine. Please type in his name and read about him.  I wish you and your family the best. I know from past experience that there is nothing worse than to watch someone you love suffer. God bless you and your family you will be in my thoughts and prayers. By the way he is affilliated with Presbyterian Hospitals of Dallas and Plano.
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