Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
New
How I Found Out I had Crest Syndrome/Disease
- By CrestLady · Posted 6:46 pm
- Journal · 0 replies
- After being misdiagnosed by one doctor as having rheumatoid arthritis, I found out fr. another rheumatologist that I didn't have RA. I have Crest, specifically three of the five symptoms. I was so glad ...
happy 4th of July
- By steviemac · Posted 12:31 pm
- Journal · 0 replies
- I want everyone to be nice to others like, opening a door, or let another driver through....Just try to be a good person to all that you meet...Just say hi, or have a great nite...And make sure your animals ...
Amyloidosis Support Groups - NEW MEETING K.C.
- By Muriel · Posted yesterday at 11:28 pm
- Journal · 0 replies
- August 8th. E-mail muriel@finkelsupply.com for details. We are excited to be starting a new group. Watch the website www.amyloidosissupport.com for updates. Muriel Muriel Finkel President AMYLOIDOSIS ...
Lifeboat Perspective
- By Betty-Oops · Posted yesterday at 4:20 pm
- Journal · 1 reply
- I have Stiff Person Syndrome, SPS. I have been in other forums where the focus is SPS only, helpful to understand the mechanics of the syndrome. All difficult diagnoses have their own individual recipe ...
Did you attend the conference? Why? or Why not?
- By joyceg98 · Posted yesterday at 2:43 pm
- Journal · 1 reply
- Let's talk about the pros and cons of attending a patient conference. What are the benefits? or what kept you away? We would like to learn, so that we can serve you better. http://bit.ly/14wRzy The radio ...
Heading to Maryland Sunday and Hare Krishna
- By FridayThe13th · Posted yesterday at 9:52 am
- Journal · 1 reply
- It's almost that time. Time to go get this over with. One more day at work then the infamous "VHL Vacation" I just keep reminding myself..."It is what it is". I stopped the other day to think about it ...
LONGGGGG DAY!!
- By Blkbeauty12 · Posted July 1, 2009
- Journal · 0 replies
- My body is aching badly today. I'm also tired, tired, tired ...
Gerstmann-Straussler-Scheinker Disease Or GSS
- By majbaker · Posted July 1, 2009
- Journal · 0 replies
- If you have Gerstmann-Straussler-Scheinker Disease Or GSS please let me know I would like to talk to you. My husband has this and is part of the Indiana kindred. If you are from the the united states ...
back & chest pain
- By Binu · Posted July 1, 2009
- Discussion in Getting a diagnosis · 0 replies
- About 3 months back, I had a severe pain which started in the back (middle) and spread to the chest. The pain was excruciating after I slept for about 6 hours and it was almost difficult to breathe as ...
Diagnosis, Management & Treatment of Progressive Neurological Disease
- By Kim · Posted June 30, 2009
- Discussion in Finding a doctor · 0 replies
- National Tay-Sachs & Allied Diseases Association, Inc (NTSAD) and Brigham & Women’s Hospital are pleased to offer a CME Conference, Diagnosis, Management & Treatment of Progressive Neurological Disease ...
BE THANKFUL FOR WHAT YOU HAVE
- By Blblues_1 · Posted June 30, 2009
- Journal · 1 reply
- Have you ever thought that life is here to teach you some sort of a lesson wether it be money, health, family? EVERYONE has one of these life problems. I was born with Hereditary Sphereocytosis. I have ...
MGUS
- By Blkbeauty12 · Posted June 29, 2009
- Discussion in How my disease has changed my life · 0 replies
- I'm more concious of what I eat and drink; I'm also more aware of what my son eat and drink! I feel like I'm always "waiting" for a final curtain call or something. I mean, I sit on pins and needles all ...
Severe Class 2 Malocullsion
- By akapoison · Posted June 29, 2009
- Discussion in How my disease has changed my life · 0 replies
- Hello, my name is Evelyn Wildes. I was born with a Severe Class 2 Malocclusion. I suffer chronic pain, muscle spasms, migraines, clicking in both jaw joints, severe TMJ, and limited opening of the mouth ...
CCA life expectancy
- By Ekaterina · Posted June 29, 2009
- Discussion in Getting a diagnosis · 0 replies
- Hello! My name is Kate, i am 28 years old. I have a problems of information because i am from Russia were genetics is an exclusive specialization. I want to know about genetic differences between Marfan ...
Amyloidosis Support Groups Inc. - Summer/Fall meetings
- By Muriel · Posted June 29, 2009
- Journal · 0 replies
- JULY 11 - DALLAS - Dr. Shaji Kumar Mayo/Rochester 18 - CHARLOTTE NC – Dr. Robert Kyle Mayo/Rochester AUGUST 15 - DC, MD, VA, - - Dr. Joseph Mikhael – Mayo/Phoenix 22 – ROCKY MOUNTAIN – DENVER - Dr. Matous ...
Tarlov Surgery Outcomes.
- By ColleenInCanada · Posted June 26, 2009
- Discussion in Getting a diagnosis · 3 replies
- I have just been diagnosed with a 1.5cm Tarlov cyst in my S1-2 region. It has been causing sciatic type pain for the past 3 yrs. I am waiting for an appointment with a neurosurgeon - which will likely ...
Solo Walking - Out there - SPS friendly?
- By Betty-Oops · Posted June 26, 2009
- Journal · 17 replies
- I posted yesterday about my wistful thinking about walking. Thinking is better if followed by postive action, so... I want to walk my new neighborhood, but SPS symptoms of agoraphopia, heightened startle ...
It's Cost Me My Job, Insurance, Part Of My Sanity, And Still Undiagnosed
- By lf325 · Posted June 25, 2009
- Discussion in Getting a diagnosis · 25 replies
- I have had a chronic condition for over a year and am still undiagnosed. My symptoms include fatigue, nausea, occasional vomiting, headaches, changes in bowel, reoccurring flu, and a constant thirst ...
Hypercalciuria
- By Russellsmommy · Posted June 25, 2009
- Journal · 0 replies
- Hi there, my son has hypercalciuria and I am looking for other parents of children with the same disease. In addition to this, he has asthma and allergies and was 2 months premature when he was born ...
Looking for anyone that has a son that has ALD
- By bluesweets · Posted June 25, 2009
- Journal · 0 replies
- My son James was diagnosed in 2003 with ALD. It is a rare brain disorder. It`s the fatty tissues around the brain detoring. And because James was diagnose so late there is nothing the doctors can do for ...
