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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?
I have found a drug that so far has cured my son of PFAPA! Please Read!!
- By mdjb_bryant · Posted 8:42 pm
- 0 replies
- My son was diagnosed with PFAPA almost 4 years ago. He has been on predisone a bandaid for it the whole time. After test after test they finally sent my son to a rhumatologist. Before his first visit ...
What do you do when the dr. says we have done all we can
- By pinhead2009 · New reply 5:07 pm
- 5 replies
- Yeah, Can you believe that. They said we are at the end of the road....nothing we can do for you, Gave me the name of a pain management Dr..... I want to SCREAM.... The pain is unbearable. Trigeminal ...
Ohtahara Syndrome (rare Epilepsy)
- By lethallawgirl · Posted 1:39 am
- 0 replies
- My son was born with this rare form of Epilepsy, Ohtahara Syndrome, last year. I am wondering since I was diabetic in a previous pregnancy (within a few months too) and not treated in my last pregnancy ...
fahrs and chemical toxcity
- By kellyjoe · Posted yesterday at 3:56 pm
- 0 replies
- looking to talk with others who may have fahrs disease and brain injury from chemicals ...
mucha-habermann disease
- By doraj · New reply yesterday at 12:29 am
- 1 reply
- I was diognoised with this november 2008.It started with a few spots just above my knee now every where I look the spots are there,I have to wear long sleeves & long pants,not bad now its winter but not ...
Looking for those with mastocytosis
- By HelenD · New reply November 15, 2009
- 40 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 ...
Tarlov Cyst Disease
- By Sandy8 · New reply November 15, 2009
- 43 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 ...
Jansen Metaphyseal Chondrodysplasia
- By littleLevi · Posted November 13, 2009
- 0 replies
- If you know someone with JMC I would love to share the little information I have ...
msa
- By Dyates · New reply November 10, 2009
- 4 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 ...
Dercum's Disease life of pain
- By jhewels · New reply November 10, 2009
- 1 reply
- 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 ...
My Mastocytosis babble
- By Cocoapuff68 · Posted November 10, 2009
- 0 replies
- I have lived a hard life nothing was given for free I only have one brother no other siblings for me Bone marrow biopsy in very bad spot the results where not what I had thought Things where starting ...
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 ...
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 ...
