Journals
Why I Have No Faith in Doctors Today
- By Billie_Jo · Posted 4:31 pm
- 1 reply
- Ok. Those of you that know me, I mean really know me, don't be surprised by the possibility of this becoming a very negative thread. I can't say how it'll turn out, but I'm not real impressed right now ...
It's Done- Now to a New Beginning
- By Jer_ · Posted 11:52 am
- 12 replies
- The procedure, as planned, was done exactly a week ago today. I woke up feeling good and continued to feel good throughout most part of the next 72 or so hours with having a very minimum of pain medication ...
keeping joy and faith
- By kworkman · Posted yesterday at 1:32 pm
- 4 replies
- So many people ask me how can I smile through all my pain and tragedy. The key is to remember when comparing your self to others compare down not up. In 1992 when diagnosed with cervical cancer at age ...
Unknown Diagnosis right now
- By greeneggs416 · Posted yesterday at 10:34 am
- 2 replies
- For years pain has racked my body it comes in episodes as I call them. I have triggers and know a lot of them but unfortunately that does not help a whole lot. I have been diagnosed with Syncope, Lyme's ...
tarlov cyst
- By Pam858 · Posted May 22, 2013
- 14 replies
- I am having tarlov cyst surgery and a laminectomy at L4 L5 soon. Untested in hearing from people who have had these cysts or had the surgery ...
Building community
- By joyceg98 · Posted May 20, 2013
- 0 replies
- Here's a great list from Robin Martinez of SmartPatients about how YOU can help to build the community. You are already doing most of this, but it's a good reminder of what makes these communities so ...
Another Update On My Life
- By LucyHeart · Posted May 20, 2013
- 0 replies
- Hey everyone! Remember my last journal? If you don't, you can find it on my profile. I have been doing great. I have tried lots of different foods and not all tasted good but I have found some new foods ...
AL-ANTIBODY- TRIAL LIVE IN THREE LOCATIONS
- By Muriel · Posted May 20, 2013
- 0 replies
- AL-ANTIBODY- TRIAL LIVE IN THREE LOCATIONS NEOD001 TRIAL NOW LIVE AT THREE LOCATIONS IN USA: See our website www.amyloidosissupport.com near flames on top for locations and for the fact sheet…if you have ...
FAP-TTR-HEREDITARY- TTR TRIALS LIVE - ISIS
- By Muriel · Posted May 20, 2013
- 0 replies
- HEREDITARY- TTR TRIALS LIVE - ISIS http://www.clinicaltrials.gov/ct2/show/N CT01737398?term=ISIS+FAP&rank=1 http://www.amyloidosissupport.com/ISIS_4 20915_final.pdf ISIS TRIAL NOW LIVE AT THREE LOCATIONS ...
Any one with Sneddons Syndrome
- By kworkman · Posted May 19, 2013
- 0 replies
- I have been going in circles trying to find a doctor comfortable treating Sneddons Syndrome . I live in Md but willing to travel does any one know what Dr diagnosis and treats Kim ...
Hemiplegic Migraines and permanent left vision loss
- By latisha39 · Posted May 18, 2013
- 9 replies
- I have recently been diagnosed with Hemiplegic Migraines. However my doctor can't explain why i have now permanently lost vision in my left eye. When i have migaines it still comes and goes but there ...
PT
- By Rondogg333 · Posted May 18, 2013
- 0 replies
- I went my first PT since coming home in march. He seems positive he can help with my balance. Yay ...
I went away to come to Life!!
- By Billie_Jo · Posted May 18, 2013
- 10 replies
- Hi Everyone.... First, let me apologize for my random absences.... That's why some of you have my email, and even phone to text.... I kind of have a habit of disappearing for a time, then popping back ...
Introducing our new Gaucher's Disease Support Community
- By Walter · Posted May 16, 2013
- 0 replies
- Dear members, Today we launched a new support community focused specifically on Gaucher's disease. If you or someone you care for are affected by Gaucher's, we hope you'll sign up for this new community ...
keystone tesing
- By lori326 · Posted May 16, 2013
- 0 replies
- Anyone know about the new keystone tesing in pa and how to deal with EDS/disability and needing to test at a different time/day than the rest. My daughter is having trouble getting there to take AND FEELING ...
Side effects of spironolactone
- By hypokalemicgirl · Posted May 14, 2013
- 1 reply
- Has any females out there taking spiro had any horrible menstrual symptoms? Since I've been on it, my cycles will last for days and are really heavy. I am now anemic because of it ...
AVS results
- By MarshaR · Posted May 14, 2013
- 0 replies
- I got my AVS results back. Great news!!!! The second AVS was successful this time. My left adrenal gland with the nodule is the little culprit. My surgery is scheduled for June to have the adrenal gland ...
Shredding for Charity
- By joyceg98 · Posted May 14, 2013
- 0 replies
- If you live anywhere in the Boston-Providence area, there is a SHREDDING EVENT this Saturday, all day at Miller Recycling. For $3 per box (which they will donate to VHLFA) they will shred your documents ...
Flu-like Symptoms Caused an Emergency CT Scan and CBC Today.
- By Jer_ · Posted May 13, 2013
- 18 replies
- This morning began in a left inguinal lymph node being a little touchy during a shower. I passed it off for being out in the yard all weekend. However, when I drove to work and got out of the vehicle ...
A prisoner in my own body thanks to RSD
- By ememk4 · Posted May 13, 2013
- 9 replies
- Im 15 and have RSD in the right side of my body in many different spots. I was diagnosed in march and have been waiting it out find out what I am supposed to do from here. I started physical therapy she ...
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