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Welcome to Inspire!
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Finding emotional support
Are you getting the support you need? If so, how did you find it and what would you recommend to others?
sperocytosis
- By jacksmum · New reply October 6, 2009
- 6 replies
- Hi, i live in the uk and have been franticly searching the internet this evening for some answers... i must say that one answer i have found has amazed me... my son was diagnosed 12 years ago with hereditory ...
Trigeminal Neuropathy
- By pinhead2009 · Posted October 6, 2009
- 0 replies
- Has anyone done the Gamma Knife (radiation) with good results ...
Tarlov cysts
- By dolfinangle2003 · New reply October 1, 2009
- 34 replies
- I have ben diagnossised with a Tarlov Cyst on the end of my spine. I am in terrible pain and can not find a Dr. to help me. Is there anyone else that knows anything about this kind of cysts that could ...
hereditary spherocytosis
- By hspherocytosis · New reply October 1, 2009
- 8 replies
- it seems like everyone has had or known someone who has had their spleens removed becuase of hs.i have hs and i am 23 and still have my spleen. it has been enlarging over the last few years. i am told ...
Spousal/partner support
- By DrJim · New reply September 30, 2009
- 3 replies
- How do these odd chronic diseases affect your relationships with your spouse/partner/family/co-workers? My wife often says she wishes there was a support group for her to help deal with the changing symptoms ...
madelungs deformity
- By las03 · New reply September 24, 2009
- 8 replies
- would like to talk with people that also have this so I can talk to in helping me cope with this problem and new problems that are coming about because of this disorder. Thanks so much. Lori ...
Ellis Van Creveld Syndrome
- By carol_slone · Posted September 20, 2009
- 0 replies
- My nephew has Ellis Van creveld Syndrome. I live in Ky. I would like to see if i could find someone who has ellis van creveld ...
Post Polio Syndrome
- By spiritlove · New reply September 15, 2009
- 4 replies
- I would like to hear from others with this condition. For the last 4 years I followed the "Conserve to Preserve" model espoused by Dr. Bruno. Due to a different health problem last October, leading to ...
scleroderma
- By ramirez · New reply September 15, 2009
- 1 reply
- Hi. My daughter passed away aug,1 2009 she suffered with scleroderma for 2 years. she was 17 years old. I would like to meet someone who can understand what i'm going through ...
Anyone know anything about RSD?
- By tmichaelroche · New reply September 14, 2009
- 2 replies
- I would like to hear from anyone diagnosed with RSD/CRPS. I don't know much about it's treatment and disabilities that the disease causes ...
polymyalsia rehematica (PMR)
- By beet · New reply September 13, 2009
- 6 replies
- MY HUSBAND WAS DIAGINOSED WITH PMR A YEAR AND A HALF AGO. hAS ANYONE HAD THIS?? I NEED TO KNOW IF IT DID GO AWAY ...
myelofibrosis
- By defro222 · New reply September 13, 2009
- 1 reply
- My sister recently passed away from this disease, which has no cure She died within 6 months of diagnosis, even though current literature says one can live 10-15 years. Current literature also says it ...
Gastro-anaphylactic shock in Masto patients
- By Poetessa · New reply September 6, 2009
- 62 replies
- Hi Everyone, I am just full of questions lately!! I was wondering if any of the masto patients or those who suspect they have it have heard of gastro-anaphylactic shock which is very different from the ...
Mastocytosis and enlarged Lymph Nodes
- By Poetessa · New reply September 5, 2009
- 13 replies
- Hello to all, I just wanted to ask if anyone here who has Masto has been told that their lymph nodes are enlarged. I was having an ultrasound of my upper and lower abdomen and it came back that my porta ...
Mastocytosis and Natural Healing Treatments
- By Poetessa · New reply September 2, 2009
- 13 replies
- Hello everyone, I just answered a question that Melp posted in the gastro discussion about vibrating gastro tracts and if anyone has thought of yoga and this brought me to ask a few questions to the group ...
anti-amphiphysin antibodies, stiff-person syndrome, breast cancer
- By RT · New reply September 2, 2009
- 13 replies
- My wife was recently diagnosed with Auto antibodies to a 128-kd Synaptic Protein. According to The New England Journal of Medicine there are only Three Women with the Stiff-Man Syndrome and Breast Cancer ...
Picc line problem again!
- By ttlouise · Posted August 27, 2009
- 0 replies
- Last night at 2:30 am my husband tried to flush my picc line and it barely flushed. He has been saying its getting harder and harder to do. I can feel it in my chest most of the time. Last night I felt ...
Support for people with MEN2?
- By joyceg98 · New reply August 23, 2009
- 2 replies
- We are working with a lady with a pheochromocytoma who may have MEN2. Is there an organization that works with folks with MEN2? Thank you, Joyce ...
Anyone near us??
- By maciesmom · New reply August 19, 2009
- 26 replies
- Im looking for parents and children who have been affected by Pitt Hopkins Syndrome. Is anyone living nearby? We live in Massachusetts. I look forward to hearing from you. Charleen, Mom of Macie ...
Mastocytosis and Sleep disorder
- By Gman206 · New reply August 19, 2009
- 18 replies
- Do a lot of us with SM have sleep issues? I find I see the sun come up far to often before I can fall a sleep. I try sleeping pills, melatonin, extra benadryl... you name it. It makes it very hard to ...
