I was diagnosed with Chiari Malformation in 2008 , Decompressed in 2012!
I moved to ID recently to escape the long harsh Winter months in CO! I have been doing better here then I have in yrs! That is until Mother's Day weekend!
I've been trying for yrs to get tested for EDS! Right now I'm having issues even getting into a Neuro?
The DR's here won't listen and I'm getting worse by the day!
I bruise super easy, dislocate ribs, SI joint, double jointed, I've had 5 kids who were all 9lbs and over, I'm 5'7 and go between 112-120! Even myOB made a comment about what other Mothers would give to have my skin? Because I was huge yet not 1 stretch mark!
I was shocked when I looked up EDS to see the definition of club foot! There was a picture of the same brace I had to wear when I was little! I have had flat feet, orthopedic shoes in Middle school but I'm the only Survivor in my family and can't ask the questions?
I forgot to mention my Father, his 2 brother 's and my grandfather all passes away before 50 from Vascular and heart disease! I have a cousin on my Father's side who had a stroke at 30. They sent her home Several times saying she was too young? Now she's in a wheelchair and can't function very well! Why do they make us suffer?
I was also diagnosed with an unusually large amount of White Matter Lesions on my brain and the last MRI showed they have increased in mass and quantity over200!
I'm getting desperate! I have spent the last month stuck home on my couch, heart palpitations, cold sweat's, ringing in my ears, numbness and tingling, problems getting words out, that's just the short list! I've lost all my muscle tone over the last month or so, my legs have always been thin but now look like chicken legs! I'm having a lot of stomach issues also.
I went back to the Internal med Dr here and begged for a referral to Neuro and once again I've been refused, I asked for an MRI no?
I was feeling so horrible and frustrated i teared up! He then asked me if I'd considered a Psychiatrist??
Then he did the Fibro touch points?? I know my body and can tell something is really off! My ICP is bad headaches, burning pain in my head! That's not Fibro!
I'm in the Boise area any help or suggestions would be so appreciated!!