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My disease has no treatment
How do you cope and what suggestions might you offer to others in the same situation?
Looking for those with mastocytosis
- By HelenD · New reply 2:22 pm
- 30 replies
- Comfort to all. I learned back in June that I have systemic mastocytosis. According the pathologist that performed my bone marrow biopsy I am the 27th confirmed case here New Mexico. Though I feel I have ...
CRPS and RSD Information - Can't go on living like this !
- By tmichaelroche · New reply November 4, 2009
- 10 replies
- Does anyone suffer from these conditions? I was told that exercise and physical therapy would help aliveate some of the pain. How in the HEL_ am I supposed to exercise and take therapy when I can't even ...
Chondrocalcinosis CPPD
- By 1irishman · New reply October 31, 2009
- 10 replies
- Does anyone have this disease? Looking to find anyone interested in having a support group. How do you deal with the constant pain? Need someone to talk to who knows what it is like ...
erythroblastosis fetalis / fetal hydrops
- By rosebud050298 · New reply October 30, 2009
- 22 replies
- I wanted to know it anyone is familiar with fetal hydrops pr hydrops fetalis. if anyone knows anything about this please let me know ...
Systemic Mastocytosis
- By jr7449 · New reply October 29, 2009
- 32 replies
- I was diagnosed with systemic mastocytosis about 6 months ago. This was after years of seeing doctors for my skin, which has been worsening with red/brown blotches that swell into hives when having an ...
Dercum's Disease life of pain
- By jhewels · Posted October 29, 2009
- 0 replies
- Hello I am a Dercum's patient who is trying to find anything I can about this disease to help myself and others who suffere from it. If you have painful lipomas then you probably suffer from this disease ...
msa
- By Dyates · New reply October 28, 2009
- 3 replies
- I wasdiagnosed 5 yrs ago with probable MSA. I have seen multiple Dr's at mayo clinic in MN. MSA can't be diagnosed definately except by autopsy of the brain. Problems started in my feet working it's way ...
Henoch-Schonlein purpura (HSP)
- By nativef0x · New reply October 26, 2009
- 35 replies
- My 16 yr. old son was diagnosed a few months ago with HSP Henoch- Schonlein purpura. His 1st symptom was a reddish purple dotted rash from his thighs down to his ankles. The rash went away after about ...
central pontine myelinolysis
- By bitsofglass · New reply October 23, 2009
- 164 replies
- I don't have this disease, but my 88 year old father is currently being tested for this. He was driving and his mind was sharp until April 13 when he was hospitalized for low sodium. When he came home ...
CMTC meeting the Netherlands 31st of October
- By LexVanDerHeijden · Posted October 23, 2009
- 0 replies
- On the 31st of October the annual CMTC meeting in the Netherlands will be organised again (in July normally in the USA). In case you want to join this meeting, you need to be either a member or a doctor ...
The Nameless Sickness
- By dwsoelter · Posted October 22, 2009
- 0 replies
- Hi Everyone, I hope I'm posting this in the correct area. I've been sick for roughly 2 1/2 years I'm going to appologize in advance as this is going to be an extremely long post. I'm copying a bit from ...
Tarlov cyst causing bladder problems
- By Maggie2300 · New reply October 19, 2009
- 36 replies
- Hi I am new to the group and wondered if anyone has had problems with bladder infections that turn out to be not an infection, as I keep getting these and my doctor has no idea what to do about it. I ...
Tarlov Cyst Disease
- By Sandy8 · New reply October 19, 2009
- 42 replies
- Anyone out there with Tarlov Cyst Disease? What a frustrating experience.. Most doctors have never heard of it and I'm convinced thousands of people are misdiagnosed... The most common complaint is extreme ...
Cyclic Vomiting Syndrome CVS
- By Misdiagnosed · New reply October 17, 2009
- 15 replies
- Hi, my name is Jodie and I have been suffering for 20 years with CVS cyclic vomiting syndrome, it is severe bouts of nausea and vomiting can last any where from 1 day to months at a time nothing takes ...
fahrs disease
- By kellyjoe · New reply October 7, 2009
- 1 reply
- does anyone have info or have a loved one with fahrs my husband was hust diagnosed ...
Ritchers Syndrome - Non Hodgkins Lymphoma
- By JillPinky · Posted October 7, 2009
- 0 replies
- My husband was diagnosed with Non Hodgkins Lymphoma Grade IV B and Leukemia. He was responding well to treatment, but then he developed Hypercalceamia level 17.1. He managed to beat that without any complications ...
research
- By kellyjoe · Posted October 2, 2009
- 0 replies
- not sure how to get that report kellyjoe ...
looking for help researching
- By kellyjoe · New reply October 2, 2009
- 1 reply
- looking for info on Fahr's disease for my family ...
Does anyone have Mitochondrial Disease?
- By lildevil2956 · New reply September 30, 2009
- 5 replies
- i was looking to talk to other people that are familiar with this disease. My son is 3 1/2 and got diagnosed in july of this yr with it. i know alot about it but i always want to know more stuff ...
Gerstmann Straussler scheincker
- By shasha_kitty · New reply September 29, 2009
- 7 replies
- HI there , I am really loss for words right now I have recently lost my mother to this Rare Disease. I have seen my grandfather get sick and pass away and now my mother and now my aunt is coming down ...
