Well I saw a doctor here in town that deals with alot of fibromyalgia and pots syndrome and autonomic disorders after seeing the third NS that said I have a Chiari but it is not causing symptoms. I saw this doctor today and his impression is that I have the Chiari, fibromyalgia, he said he probably wouldn't be suprised if I had POTs syndrome and he could almost bet I have nerve damage. His response was that he didn't know if the Chiari was contributing to the problems but he wouldn't rule it out. He thought that the fibro may be brought on by combination of diabetes, poss the Chiari and poss POTs. He said he didn't want to overwhelm me right away and he was going to try to improve each thing individually but it may never go away but he was going to do what he could. So he put me in a fibromyalgia rehab program, ordered labs, a lumbar xray, posturapthy, and wants an EMG...I have insurance but they collect coinsurance and unmet ded at time of service. uggghhh as if I have extra money. He did say he would fill out short term dis papers and even perm dis papers but perm dis would take three years? Is that true with all those conditions??? Any thoughts or comments appreciated.
I would press for the CINE honestly. I was told by the neurologists I saw that Chronic Fatigue syndrome and Fibro were causing my issues but my NS didn't agree. I had surgery and now I have no sign of CFS or Fibro. Before I could barely get out of bed and struggle through the day at work! After work I went straight to bed. Now after work I exercise, cook dinner, do housework, socialize, etc.
Hi…
You asked about disability…I applied for SSDI and was approved within 4-5 months after applying…I did the app on line…www.ssa.gov
I would suggest that yu let all your doctors know you are applying so they have a heads up…I made it a point to tell the doctors office managers this too…as they will be sent forms to fill out and get back to SSDI…it is usually the doc offices that holds the process up.
Hope this new doc is helping you…
Oh…I am sure , by now, you have learned this…in the case of Chiari…size does NOT matter…also…my NS pointed this out to me…an MRI is basically a ’ snap shot’ of each slice…he was trying to explain that even though MRI is a great tool…it is just that…a tool…he went on to tell me after surgery that the MRI and what she saw once he got in there were 2 different things…his words wheee something like…" MRI showed herniation , but it was much more crowed in there than the MRI showed.’…the MRI had been a recent one.