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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?
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 ...
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 ...
stiff person syndrome
- By docmaus · New reply September 27, 2009
- 28 replies
- By docmaus Posted today at 4:51 am · 0 replies Shared with the public Edit · Delete 0 RecommendationsRecommendPrintReport postIt is like having multiple sclerosis, parkinsons, and tetness. most of all ...
Diagnosis, Management & Treatment of Progressive Neurological Disease
- By Kim · New reply September 23, 2009
- 2 replies
- This seminar is of interest to anyone dealing with a progressive neurological disease without a treatment or cure. It is intended for physicians but families are always welcome. Please share the details ...
Menkes disease
- By menkesdisorder · New reply September 14, 2009
- 17 replies
- My son has Menkes disease. It is a rare genetic disorder. Does anyone here have any advice? I can't get any copper supplements here for my son. I need some information on what is the progression of the ...
Gerstman's Syndrome
- By adultchild · New reply September 6, 2009
- 3 replies
- Interested in anyone with experience in treating and/or coping with this condition and its progression. thanks! PS - not sure of the correct spelling of Gerstman's Syndrome ...
othara syndrome
- By sad-mom182006 · New reply September 3, 2009
- 17 replies
- My son is 18 months old and the is no treatment so far him and they are saying that he also has a glycogen storage diease in with the seziure disorder and most of my family thinks i did something while ...
Help just diagnosed with progressive spastic paraparesis
- By gizmo · New reply August 31, 2009
- 1 reply
- Can any one help me to understand this condition I have just been diadnosed after months of mris. test etc. Feeling a little confused at the moment and not sure what to expect in the future ...
Mastocytosis: red spots that ooze...?
- By AriahsMom · New reply August 30, 2009
- 10 replies
- My daughter, Ariah age 13 mos has mastocytosis. The form she has is called urticaira pigmentosa. For the past week she has been getting these red spots on her body. They appear in the morning and about ...
17 year old daughter with Tietze's syndrome....HELP!!!
- By sheila_r · New reply August 14, 2009
- 26 replies
- Hello, I am new to this group... But my problem is with my 17 year old daughter who was originally diagnosed with costochondritis...but has had nothing but severe, chronic PAIN!!-(which they call: Tietze's ...
Wacky "Scientific" Medical Theories
- By SickOfBeingSick · New reply August 1, 2009
- 4 replies
- We've all experienced them. We've all wondered if our doctors parked their brains at the door when they entered medical school. So do tell, what wacky "scientific" diagnosis, treatment, or other nonsense ...
ROHHAD
- By Haveyroo · New reply July 31, 2009
- 7 replies
- My 4 year old daughter was diagnosed with Neuroblastoma Cancer last December 2007 - after 1 1/2 years of trying to find out what was going on with her. This November she was also officially diagnosed ...
Abscence of the Inferior Vena Cava and Polyspleenia
- By Chelle0110 · Posted July 23, 2009
- 0 replies
- Can anyone help me? I was diagnosed with this abnormality last year and unfortunately it is very rare and medical advice is very scarce ...
my wife, carol is being weaned off the drug prednisone.
- By rinodc123 · New reply July 20, 2009
- 3 replies
- carol's at 6mgs. was at 60mgs. starting aug. 08'. she's a class 1, depressent. taking anti-depression and anxiety drugs. they are not working. question-------------------------------- ------is there any ...
