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Welcome to Inspire!
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Getting a diagnosis
With rare diseases, this can be a lengthy and frustrating process. Was it for you?
Masto symptoms.. hot skin but no fever?
- By katherine67 · New reply 4:42 pm
- 5 replies
- I'm working on getting a diagnosis for my 3yo daughter, Hannah. One of the things I think I'm noticing with her is that she feels very hot during a flare, but sometimes shows no fever (or it fluctuates ...
Cramp Fasciculation Syndrome
- By Griff · New reply 4:36 pm
- 74 replies
- For two years I have been having electric shocks in my arms and hands, muscle twitches all over, and excruciating stabbing pains in my thighs and calves. This week I was finally diagnosed with Cramp Fasciculation ...
Isaac's syndrome
- By Lynn2 · New reply 12:18 am
- 1107 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 ...
Tarlov Surgery Outcomes.
- By ColleenInCanada · New reply yesterday at 1:55 am
- 12 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 ...
Help dignose me
- By skittles · New reply November 5, 2009
- 16 replies
- I have continued lactic acid burn in my muscles, even in my jaw when I talk. I have it everywhere. Just before I cry the burn is there. Typing this gives me burn in my arms and hands. I cannot feel when ...
What Do You DO To Help Cope With Your Dx.
- By jhewels · New reply November 5, 2009
- 5 replies
- I fight each day to keep my life as normal as possible some days I may not try at all. I don't want to stop being included in things but I don't want them to expect be to do everything also. I don't want ...
Differences Between Tests?
- By dianes123 · Posted November 5, 2009
- 0 replies
- Can someone tell me the difference between a Pet-Scan and a Spect-Scan? Thanks for any info, Diane ...
Head to toe body twitching w/other symptoms
- By Lynn2 · New reply November 5, 2009
- 27 replies
- I am putting this out here b/c I am at a crossroads. I need to find a doctor or a facility that is knowledgeable in this area. I have seen lots of docs with no diagnosis. Here are the basics: -Head to ...
Autoimmune diseases
- By thebrick · New reply November 4, 2009
- 6 replies
- Some of the hardest diseases to properly diagnosis are autoimmune diseases. Having five of these diseases, I have also been through year after year of misdiagnosis. In the intrim I have started a non-profit ...
Neonatal Alloimmune Thrombocytopenia
- By YTP · New reply November 4, 2009
- 4 replies
- Has anyone had a diagnosis for their newborn baby called Neonatal Alloimmune Thrombocytopenia (NAIT) or fetomaternal alloimmune thrombocytopoenia (FMAIT)? Fetomaternal alloimmune thrombocytopenia occurs ...
Does hydrocephalus cause headaches or what?
- By gigglebox · New reply November 4, 2009
- 3 replies
- So I have been having headaches for almost a year now and am getting nowhere with the docs. have had a ct and an mri. Both showed 20mm arachnoid cyst in postetior fossa and a sebaceous syst and hydrocephalus ...
Adrenalectomy, Hospital Meds
- By GingerPeaches · New reply November 4, 2009
- 1 reply
- When in the hospital for an adrenalectomy, who is the overall person who coordinates and accesses your medication? Should you bring all the medication you are presently taking to the hospital? During ...
diverticulosis attack???anyone???
- By mph · New reply November 3, 2009
- 8 replies
- anyone get this? Seems to be related ...
I haven't been diagnosed with anything!
- By Volk · New reply November 3, 2009
- 6 replies
- It all started when I was about 10, I passed out in school and my mother took me to the pediatrician who told her "it was my hormones" and she should just make sure I had breakfast in the morning... After ...
Spect Scans and unexpected Kidney
- By dianes123 · New reply November 2, 2009
- 1 reply
- Hello all, I was wondering if any body could help me with a question I have regarding a spect scan I had back in Sept. of 2008. Now this spect scan was to be for my back, legs, and neck and came out to ...
Recurring fever in children
- By ljanewyork · New reply October 31, 2009
- 5 replies
- My son has had recurring fever (102-103 for 4 or 5 days) since he was 8 months old and it happened every 29-30 days for the last 4 years!!!! he has NO OTHER SYMPTOMS!!!! nothing. he is almost 5 and stil ...
Pitt Hopkins Syndrome
- By Shark · New reply October 30, 2009
- 23 replies
- My 22 year old daughter has recently been in hospital for diagnostic testing regarding her uncontolled epilepsy. The doctor has suggested Pitt Hopkins. He has also said that there is no definite blood ...
4year old daughter and her Horseshoe kidney
- By pie830s · New reply October 29, 2009
- 5 replies
- My daughter has a Horseshoe Kidney and has had to many infection. She has been complaining of pain inher back,side and hurting when she pee pee. she took a tip test and they said she didn't have a UTI ...
Match your Symptoms
- By orthe · New reply October 29, 2009
- 10 replies
- For those who have an undiagnosed illness, post your symptoms to meet others who suffer from the same symptoms or to get other people's opinion on what it could be ...
Fahr's Disease
- By Wilma · New reply October 29, 2009
- 5 replies
- Does anyone know anything about Fahr's Disease, and what would be the course of treatment for it. From all I have read there is no cure, but that it can be treated. Can anyone give me some information ...
