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Reflex Neurovascular Dystrophy Pain
- By momtobecka · Posted 3:39 pm
- Discussion in My child and school · 0 replies
- My 13 year old was just told she has RND and we do not have an appointment yet for treatment at TCI. Does anyone know what we can try for the pain in the meanwhile so she can get back to school ...
Social Security Disability Process
- By tmichaelroche · New reply 3:23 pm
- Discussion in Finding emotional support · 2 replies
- I have begun the process of applying for SSD/SSI after my 4th Lumbar surgery ruined my back forever! I know what I am in for as far as the denials and paperwork and hearings etc.... I'm just look for ...
Isaac's syndrome
- By Lynn2 · New reply 2:26 pm
- Discussion in Getting a diagnosis · 1167 replies
- Does anyone have Isaac's syndrome or have a relative or friend who does? Also, if you are just knowledgeable about this disease... Thanks, Lynn ...
doctors and fever syndromes
- By bumkin · New reply 12:45 pm
- Discussion in Finding a doctor · 3 replies
- does anyone know of any specialists outside of the u.k who might be able to give advice on diagnosis of fever syndromes as we feel we are coming to a dead end after doing loads of research and spending ...
Tarlov Disease--Third Surgery
- By Leabell · New reply 12:32 pm
- Discussion in Finding emotional support · 15 replies
- I am just curious if anyone out there has had more than 2 surgeries and if so what does your doctor say about them? I am about to have my third surgery to remove my cyst. It has been three years since ...
graves disease
- By lisajo · New reply 12:14 pm
- Journal · 20 replies
- I go to the endocrenologist in october they couldnt get me in any sooner .I have a bulging eyeball and my thyroid is underactive and not responding to the thyrixozine(synthroid) and I am in so much pain ...
mecp2 duplication
- By Matocu · New reply 12:08 pm
- Journal · 1 reply
- My 9 year old DAUGHTER suffers from a delayed maturation. After performing a complete genetic examination, has been diagnosed with a doubling of about 438 kilobases discontinuous in the Xq28 chromosomal ...
Bilateral Hetrotopia
- By libann · Posted 12:03 pm
- Discussion in Getting a diagnosis · 0 replies
- Hello to all, I'm new here and was wondering if anyone in this Community has any relation to the disease "Bilateral Hetrotopia". Any iformation would be greatly appreciated. Best Regards, Carol ...
OPLL (Ossification of the Posterior Longitudinal Ligament)
- By jh702 · New reply 11:57 am
- Discussion in Finding a doctor · 8 replies
- Help!!! I need to find a doctor that knows something about OPLL within the US. Has anyone been diagnosed with OPLL and have you found a doctor that knows about the rare spine disease in the west part ...
Second Attempt Tarlov Cyst Surgery
- By Stephanie3084 · New reply 11:05 am
- Discussion in How my disease has changed my life · 12 replies
- I am new here, so I'm not sure where to start. To make a long story short, I am a 43 year old woman who was diagnosed with a very large Tarlov cyst (about the size of a lemon) in my sacral spine in July ...
N E ONE HAVE A KANGAROO JOEY OR PORTABLE TUBE FEEDING PUMP PREFERENCE????
- By Rodeogrl02 · New reply 10:53 am
- Journal · 4 replies
- I'm going to be traveling to Disney world December 5th, and Atlanta, GA-Madison,Wi, and Illinois for family events and horse events (florida is a trip I earned after 3 weeks fighting for my life in the ...
pots/dysautonomia
- By Nina372 · New reply 10:48 am
- Journal · 12 replies
- Does anyone here have experience or knowledge about getting a pace maker for their postural orthostatic tachycardia syndrome (pots ...
Adrenalectomy
- By jetter · New reply 10:42 am
- Discussion in Finding emotional support · 72 replies
- I am considering an adrenalectomy for Conn's Syndrome. I'd like to know of experiences having an adrenalectomy and of those some time after the surgery ...
Why does God hate me?
- By djmtard · New reply 10:23 am
- Journal · 44 replies
- Since I was very young my life has been a series of bad accidents and illnesses. It started when I was 15. I was in the state finals for barrel racing and came off my horse and broke my back. Then when ...
SO excited to share what I have found!
- By pwrsrg77 · New reply 10:06 am
- Journal · 45 replies
- I have received TONS of wonderful support from this amazing community of people just like myself. All that struggle with debilitating symptoms, wrong diagnosis, less than quality doctors etc... I wish ...
Tarlov cyst might as well be a pimple
- By sciaticarghhhh · New reply 8:40 am
- Journal · 12 replies
- THey found the cyst at S1&2 when I was MRI's for back pain. Neurologist said my problem was hip bursitis...after several weeks of PT I still have extreme back pain & sciatica. It gets worse at times but ...
small cell neuroendocrine carcinoma
- By traceybanks · New reply 8:23 am
- Discussion in Getting a diagnosis · 4 replies
- I cant find any information on this I need help, please help me..God bless all ...
Question to anyone who would know ..
- By shortstuff · Posted 4:51 am
- Journal · 0 replies
- Can or does R.A. cause loss of sleep ...
Update on nausea
- By Zacolton · New reply 4:24 am
- Journal · 8 replies
- Just an update on my previous post. My nausea is almost gone now, no idea why, just gone, but anyways I'm working slowly and carefully on reintroducing food and regaining strength. I hope now that I'm ...
Getting Diagnosis with Pancreatitis
- By ReeAnn · New reply 3:44 am
- Discussion in Getting a diagnosis · 6 replies
- I have Chronic Pancreatitis and it has literally taken me decades to get diagnosed! Many others I know with this disease also have had problems getting a true diagnosis. If you expereince extreme pain ...
