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Amyloidosis Support Groups and Osteoporosis

Muriel
  • By Muriel · Posted 3:33 pm
  • Journal · 0 replies
  • Following are some interesting links from the Mayo Clinic in Rochester Minnesota about osteoporosis: http://www.mayoclinic.com/health/osteopo rosis/DS00128 http://www.mayoclinic.com/health/osteopo rosis/WO00048 ...

cerebral vasculitis

chowmein2
  • By chowmein2 · New reply 2:11 pm
  • Discussion in How my disease has changed my life · 7 replies
  • Hi. Does anyone out there have cerebral vasculitis? My doctor won't refine the name (ie: CNS) because he feels the biopsy/angiagram is too risky health-wise. I am being treated with aspirin and Niacin ...

Isaac's syndrome

Lynn2
  • By Lynn2 · New reply 2:10 pm
  • Discussion in Getting a diagnosis · 585 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 ...

A Medical Egnima

Tinman
  • By Tinman · New reply 11:03 am
  • Discussion in Getting a diagnosis · 9 replies
  • Hello I am looking for others with Stiff Person's Syndrome? I can't seem to connect with anything active on this topic. Is anyone out there ...

All of Me, Nothing of Me

blueriver
  • By blueriver · New reply 9:22 am
  • Journal · 12 replies
  • I am an extrovert and love people, yet I shy away and cave myself in. I live in constant sorrow yet, I enjoy my good sense of humor and love to laugh with others. I hardly eat, yet I am well over weight ...

Hello

Maa
  • By Maa · New reply 9:20 am
  • Discussion in Getting a diagnosis · 1 reply
  • We got a two and a half year old daughter who was born very disable with lots of seizures every day. Doctor has done all the tests which came normal apart from her biopsy. Now the doctors in uk think ...

Gait problems & Stiff Person Syndrome (SPS)... Any hope?

serendipity
  • By serendipity · New reply 8:46 am
  • Journal · 60 replies
  • I have found quite a few other postings regarding SPS, so I would like to share this and am hopeful that some of you can offer your input.... I am posting this in all of the Groups to which I belong in ...

Nothing to do with my health, but I am STRESSED OUT!

terpgirl
  • By terpgirl · New reply 8:31 am
  • Journal · 13 replies
  • I really need to vent. My boyfriend and I have been together over four years, and known each other for eight. We've always had our ups and downs as any relationship does. Things got really stressful when ...

Kidney biopsy

dizzybee
  • By dizzybee · New reply 8:20 am
  • Journal · 1 reply
  • I'm scheduled to have a kidney biopsy w/n the next few days/weeks (just saw my neph today, so don't have the date yet). My creatinine level has went from 1.55 in Oct to 1.90 in Dec. I've had an ultrasound ...

more dumb doctor stories

dizzybee
  • By dizzybee · New reply 8:16 am
  • Journal · 1 reply
  • I think I had a heart attack, pretty dang sure. Chest pain, numbness in left arm and left side of face. Had hubby drive me to fire station (around the corner) they were getting bps of 136/114 132/112 ...

Life is Beautiful

bleedingsoul

Anterior_ischemic_optic_neuropathy

abeachinflorida
  • By abeachinflorida · New reply 12:06 am
  • Discussion in Finding emotional support · 1 reply
  • I'd also like to know if there is anyone reading this that has also been diagnosed with AION. It seems that there are only between 8,000 and 10,000 cases reported annually each year, so not alot of scientific ...

NEW FRIENDS THANK YOU

mandyblue
  • By mandyblue · New reply yesterday at 11:04 pm
  • Journal · 2 replies
  • Being new to these groups, I want to thank everyone of you who accepted being my friend. I want to talk to each and everyone one of you. It may take me a couple of days as I am freshly out of the hospital ...

New here and no idea what is wrong with face

suszannah
  • By suszannah · New reply yesterday at 10:45 pm
  • Discussion in Getting a diagnosis · 2 replies
  • Hello all, i would welcome any advice or help on this.... In September 08 i got out of bath face really burned on right cheek, after a few hours it settled on numbness to top teeth, bottom teeth, with ...

worried mom

bonn250
  • By bonn250 · New reply yesterday at 1:42 pm
  • Journal · 6 replies
  • my 7 year old daughter has had fevers every4-6 weeks since she was 4.5 years old she also has swollen lymph nodes,mouth ulcers,rashes,& joint pain. This last 7-10 days. The Drs. think it might be hibernian ...

HELP!

KerryEngle
  • By KerryEngle · New reply yesterday at 12:33 pm
  • Discussion in Finding a doctor · 1 reply
  • My Mother came all the way from California in 1996, to live with me in Pennsylvania. Due to horrific pain from Trigeminal Neuralgia she was unable to continue working. She has tried everything that we ...

What to give up for New Years?

Tamyra
  • By Tamyra · New reply yesterday at 10:47 am
  • Journal · 2 replies
  • This is a hard thing to think about, when you have given up most every thing you know for the sake of illness. Illness some how changes our lives and all we thought we knew. So how can I do this? I will ...

Goldenhar Syndrome

snuggles
  • By snuggles · New reply yesterday at 3:27 am
  • Discussion in Getting a diagnosis · 2 replies
  • 12 years ago my son was born still due to a cord accident but as a parent I needed to know more.. So I had an autopsy done and when the results came back one of the diagnosis was Goldenhar Syndrome the ...

Tarlov cyst

jane_morgan

ollier's disease

ILOVEMYGRANDKIDS
  • By ILOVEMYGRANDKIDS · Posted January 4, 2009
  • Discussion in How my disease has changed my life · 0 replies
  • my dauthder has olliers disease,when she was born she was fine she looked fine she was a beautiful baby, she was born in 1977 . when it was time for her to star walking, she would sit down on the floor ...

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The NORD Rare Disease Support Community connects patients, families, friends and caregivers for support and inspiration. The NORD Rare Disease Support Community is sponsored by the National Organization for Rare Disorders in partnership with Inspire.