wondering if i have chiari malformation

[Linz13_1981]

Hi all, Im Lindsay. Im 29 and I live in england. Ive been ill for 13 years. I have diagnosis of M.E/CFS and POTS. My symptoms all match chiari so about 7 years ago i asked for a ct scan. I had it at the local hospital and the nurse at the doctors afterwards just said it was normal. Ive become much iller since then and alot of my worse symptoms are in my head and eyes. Is it possible that they could have missed it on the scan? Should i ask for another scan?

Thanks

[Linz13_1981]

Thanks selma and sparklyjojo for your replies. M.E is used for chronic fatigue syndrome in the uk as cfs doesnt come close to describing the illness. Thats really interesting jojo that you had M.E and now have chiari. Im sure it is related. I will try work up the courage to go to my doctor. my gp is not very good or nice so i think i will have to change.

thankyou for your help

[selmaS]

  Well thanks for clearing that up for me : )

and it is the same with saying u have Chiari, tethered cord, EDS....ne of it and all of it comes with skepticism....

  I know the Fibro forum is fibro and CFS here on MH....I used to go there often but lately have not...not sure if they use the term or not.....

[Sparklyjojo23]

I have to say when i was first diagnosed with chiari and started reading about CSF instead of CFS it was odd :)

Im not sure if its new term, maybe its just a UK thing. It could just be to make it sound more "medically" :) i know when i told people i had chronic fatigue syndrome they were always a bit sceptical. Although telling them you had ME didnt really help either as they automatically seemed to translate it to MS.

[selmaS]

  Thanks, I got dyslexic there, but yeah I knew Chronic fatigue, it goes with so many conditions, but wasn't sure of the ME or the terms for it they have now....lol...wow....

SO this is a new term or name for Chronic fatigue?

   "selma"

[Sparklyjojo23]

Hi Lindsay, Im from England and I was also diagnosed with ME/CFS about 13 years ago when i was 10. I had a CT scan and that apparently didnt show anything abnormal.

I recovered from that about 10 years ago and now in the past year and a half i started getting odd similar symptoms again. I thought i was relapsing with ME but it got worse and with slightly different symptoms. An MRI this year revealed the chiari, so as those above say an MRI is the best way forward!

I have since wondered if the ME symptoms from years ago were linked with the chiari


oh and Selma, ME and CFS is Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

[selmaS]

  Hi and welcome to the Chiari forum.

The Dr may not have missed it, but felt it an incidental finding and did not mention it...this happens all too often. Are u able to get copies of that MRI? If so, it would be good to compare the 2.

Can u tell us what u mean by M.E. ?...I know POTS......and CSF....

  There r Drs u can ask to see, they belong to the Ann Conroy Trust...we do have a list-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  "selma"

[epsion22]

Linz,

I am 29 also and after an MRI they found a malformation. I would recommend an MRI and mention "possible CM"... that way they will look for it, if its not there, consider yourself lucky.