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Journals
How I Found Out I had Crest Syndrome/Disease
- By CrestLady · Posted 6:46 pm
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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 ...
BE THANKFUL FOR WHAT YOU HAVE
- By Blblues_1 · Posted June 30, 2009
- 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 ...
Amyloidosis Support Groups Inc. - Summer/Fall meetings
- By Muriel · Posted June 29, 2009
- 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 ...
Solo Walking - Out there - SPS friendly?
- By Betty-Oops · Posted June 26, 2009
- 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 ...
Hypercalciuria
- By Russellsmommy · Posted June 25, 2009
- 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
- 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 ...
Surgerey delayed
- By looselinks · Posted June 24, 2009
- 10 replies
- Thursday, I was scheduled for complete spine fusion from S 1 to T=7. My pre=op hemoglobin level was only 7, and my surgeon won't operate until it is at least 12. I've never had anemia, but with Ehlers-Danlos ...
Questions about how drugs get approved?
- By joyceg98 · Posted June 24, 2009
- 1 reply
- I'm talking this afternoon (Wednesday) with Marlene Haffner, former head of the Orphan Drug section of the FDA. This came up relatively quickly, as we had to squeeze it into her busy schedule, but the ...
Empi TENS Unit
- By djmtard · Posted June 24, 2009
- 8 replies
- I just got one of these...OMG!! I can't believe how it helps! I have been popping Vicoden like candy for months now and this TENS unit has taken most of my pain away...It is designed for nerve and musle ...
messed up period
- By kimikiwi1987 · Posted June 24, 2009
- 10 replies
- OK is it just me or has anyone else thats been on pred cyclosporine, and all these other meds have problems with their periods being ereagular cause mine are so messed up it crazy doc says its probly ...
Rare Disease Day
- By BravesLover · Posted June 23, 2009
- 0 replies
- There is a day Feb.28th that has been proclaimed as Rare Day. It was first recognized in the UK. My friend sent me an email to see if I could get my governor to recognize it in the state of OK. I sent ...
Amyloidosis Support Groups Inc. - Charlotte - Jyly 18- Dr. Kyle
- By Muriel · Posted June 22, 2009
- 0 replies
- As you know we are lucky to have Dr. Robert Kyle of Mayo as our guest for the Charlotte meeting on July 18th.....when I mentioned this to Dr. Martha Skinner of Boston University Amyloid fame, she said ...
i think im losing my hair
- By kimikiwi1987 · Posted June 21, 2009
- 6 replies
- okay ive been on cyclosporine for like 3 wks now and i think im starting to lose my hair, its like one bad side effect after another.....when is this missory going to end....idk but i am glad im getting ...
