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Oooh the frustration!!
- By InSynchope · Posted 4:47 pm
- Journal · 0 replies
- I am really getting fed up with ignorant doctors who don't know anything about POTS! Anybody know a good autonomic specialist who accepts tricare? I am truely desperate to feel better, I can hardly function ...
Neuromyotonia/Isaac's disease
- By leapgirl068 · Posted 2:20 am
- Journal · 0 replies
- Hello. My daughter is 12 and is currently being tested for Isaacs. I have read through many of the threads here and seem to have many of the symptoms you all have described. I am beside myself right now ...
Ohtahara Syndrome (rare Epilepsy)
- By lethallawgirl · Posted 1:39 am
- Discussion in My disease has no treatment · 0 replies
- My son was born with this rare form of Epilepsy, Ohtahara Syndrome, last year. I am wondering since I was diabetic in a previous pregnancy (within a few months too) and not treated in my last pregnancy ...
What do you do when the dr. says we have done all we can
- By pinhead2009 · Posted yesterday at 7:37 pm
- Discussion in My disease has no treatment · 4 replies
- Yeah, Can you believe that. They said we are at the end of the road....nothing we can do for you, Gave me the name of a pain management Dr..... I want to SCREAM.... The pain is unbearable. Trigeminal ...
fahrs and chemical toxcity
- By kellyjoe · Posted yesterday at 3:56 pm
- Discussion in My disease has no treatment · 0 replies
- looking to talk with others who may have fahrs disease and brain injury from chemicals ...
Trigeminal Neuralgia
- By Ingo · Posted yesterday at 1:17 pm
- Journal · 0 replies
- TRIGEMINAL NEURALGIA SURGERY I am an 81 yr old male living in Nova Scotia, Canada who was diagnosed with Trigeminal Neuralgia in May 2009 and had a Percutaneous Balloon Rhizotomy 3 weeks ago.( Oct.28 ...
diploidy triploidy
- By jeanette83 · Posted yesterday at 11:26 am
- Discussion in Getting a diagnosis · 0 replies
- ive jst got this diagnoisis for my 16 month old baby girl can anyone help me and share some information on what is the outcome very scared and worriad at the moment shes a very healthy baby no heart lungs ...
So much to accomplish and happy about it!
- By Jerry_at_NFDF · Posted yesterday at 8:45 am
- Journal · 0 replies
- It feels great to get the first NFDF newsletter out the door. It means that we were also able to launch others programs such as our social networking campaign, Victory Junction, the Physician search tool ...
Bad Day
- By naivelittlemiss · Posted November 18, 2009
- Journal · 12 replies
- I know with GP you have good days and bad days, but why do the bad days have to be so BAD! =[ I feel like I'm being immature but really I don't quite know how to deal with GP bad days yet. I am still ...
I am having Allergy testing in December
- By ann56308 · Posted November 18, 2009
- Journal · 0 replies
- Waiting on approval to take another antidepressant other than amitriptline for a week before some allergy testing. My internal Medicine doctor says I should be able to take some thing else. I suggested ...
Stiff Persons Syndrome
- By DebW · Posted November 18, 2009
- Journal · 9 replies
- It has taken 8 months, 100 tubes of blood and enough testing that I probably glow in the dark but finally have a diagnosis. Now it is finding how to take the memory of who you were and fill the empty ...
Good Morning Levi and Wife
- By MaryRVF · Posted November 18, 2009
- Journal · 4 replies
- Good Morning Levi and Wife! Haven't seen a post yet this morning. I do hope you both are well this morning. We miss you! mary ...
how much longer will it take..........
- By bumkin · Posted November 18, 2009
- Discussion in Getting a diagnosis · 7 replies
- my heart goes out to you all. my daughter is now three and has had fever episodes from birth . she has had about 30 admissions some lasting 9 days. she has had utis and has scarring of both kidneys. she ...
EEOC and Discrimination
- By FLiceman · Posted November 18, 2009
- Journal · 0 replies
- I contacted the EEOC in September, and due to heavy volume, they called me back last week. I was interviewed recently, and they will proceed with my case. Very unique, as I had to go over the nature of ...
How To Pay For surgery
- By ilene123 · Posted November 18, 2009
- Discussion in Financial issues · 2 replies
- There are so many like myself that find themselves unable to pay for surgery. I have hyperaldosteronism and need the surgery but cant afford it.I have been out of work in N.C. since dec,2008.Have any ...
Porphyria in Indiana
- By MsLila · Posted November 17, 2009
- Discussion in Finding a doctor · 1 reply
- I am currently in the process of searching for a physician in Indianapolis or the central Indiana area with experience managing the care of patients diagnosed with Acute Intermittent Porphyria. Currently ...
finally a small glimmer of hope!
- By dizzybee · Posted November 17, 2009
- Journal · 6 replies
- went to new neurologist monday -- he specializes in vascular issues. after talking w/me & hubster, and doing all the neuro tests, he went out to review my pictures. he came back with a very puzzled look ...
Arachnoid cysts and Arnold Chiari syndrome
- By Stefanija · Posted November 17, 2009
- Journal · 10 replies
- My two year old son was just diagnosed last week with both of these. I am looking to meet others who has these or has a child who has these. I would like to find out more information and possibly hope ...
Trigeminal Neuralgia Surgery
- By Ingo · Posted November 17, 2009
- Journal · 0 replies
- TRIGEMINAL NEURALGIA SURGERY I am an 82 yr old male living in Nova Scotia, Canada who was diagnosed with Trigeminal Neuralgia in May 2009 and had a Percutaneous Balloon Rhizotomy 3 weeks ago.( Oct.28.2009 ...
Pheochromocytoma or Paraganglioma?
- By joyceg98 · Posted November 17, 2009
- Journal · 0 replies
- Oxford Outcomes has asked us to post this notice. Oxford Outcomes is conducting a qualitative research study involving interviews with pheo/para patients in order to evaluate the clarity, relevance, and ...
