Waiting on diagnosis
It is so frustrating to not get a diagnosis.
I had an auto accident on 2/1 this year and walked away with a bruise on my left arm from the airbag, 2 staples in my head, and a concussion. Other than a headache, life was good.
Two weeks later, after trying to work with a headache from the concussion, it got so bad that I had trouble remembering the simplest thing about my job. I called my primary's office and agreed to go in that day. After a brief exam, he ordered a brain MRI. The first of many to come.
No damage from the wreck but it was abnormal, in the cerebral peduncle area and it was totally symetrical. I was referred to neurologist. Since then I have had 5 brain MRI's, ct scans and MRI's of chest abdomen and pelvic, a full body bone scan, 2 lumbar punctures 2 aspiration biopsies and one surgical biopsy.
I was relatively symptom free at this point. Although o did have symptoms but later learned they were all misdiagnosed as something else : hearing loss, crying, double vision, loss of balance, and weakness in my legs and arms.
In June, I was told that I should no longer work or drive, so I am basically homebound and reliant on others for transportation. The loss of balance is so bad that i have to use a cane when i am not in my house. And the double vision has gotten to the point where it is difficult to read which is my favorite pastime.
I recently went to a neuroimmunologist that gave me a diagnosis of brombencephalitis brought on by sjogren's. He only looked at my brain MRI. I am still waiting on the biopsy results.
Has anyone else got a cns disorder but no diagnosis. Or if you have a diagnosis, how long did it take to get? Did it take 5 weeks to get a pathology report?
I've been pretty patient but my patience is wearing thin!
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Thank you for posting this!! I am so happy I found Mayo Connection, my doctors dismiss my hemangiomas (T1 & T11), but I really wonder if they are creating all these nerve, bathroom, heart and leg weakness issues.
My thoughts on these are they swell like any other blood vessel, so could this be my issues? My doctors seem to think not, but I have done my research. If anyone develops neurological or nerve issues, I think it is safe for physicians to at least address it 🙂
I pray everyday that my issues are figured out and soon. It's been a hard road these last 5 months.
Aimee 🙂
Opps! I forgot to mention my vascular hemangiomas are in my thoracic spine vertebra.
I have 2 in my thoracic spine. I have all kind of weird issues that developed suddenly, but prior to that, I told my husband I know I have had some of these symptoms over the last many years.
Anywho. My symptoms now are weak heavy legs, Nerve dumping as I call it (My nerves will fire on the left side of my body from low rib to groin, down left leg and into right glute), sometimes tight chest, Heart started PACs/SVTs, bathroom issues (BM and Urinary). I am not saying that my hemangiomas are the cause, but symptoms I have correlate with the nerves that run from T1 & T11.
I have had a very hard 5 months with tons of testing, scans and doctors and no one can explain these mystery, sometimes debilitating symptoms. I went from Go get em mother, to resting 90% of my day to stay comfortable.
I have a few more tests and I am working with Chiro and PT for muscle lock, but if things do not improve and no answers, I will be pushing for referral to mayo.
Thank you for posting links. I have researched quite a bit, but I am not sure I read over the ones you posted.
Have a great day!
Aimee
Well, its been over a year since you posted, but I found you now… How are you? Did you get a confirmed diagnosis of CLIPPERS? if so, I'd like to connect with you and @becsbuddy . Hope you are "well enough".
I'm pretty sure I heard that Dr Dan Heffez in WI specializes in the treatment of Chiari, if that would help you.
Hi, @movingtomadison @jl1. Wow, I’m really glad you found us! Not too many of us exist. I’m doing ok but it sure has been a long road. Just had a virtual appointment with the PA, who works with my neurologist, to set up the plan for the next 3 months. I’m now on cytoxan and prednisone. We’ll see.
So, have you had a long, frustrating journey to diagnosis? Probably took me 8 months til I got an MRI then a brain biopsy. Do you have good doctors? Are you doing OK?
@brayimee I read your posting, also. Have you asked the doctors for a head CT? I kept getting blown off also until a doctor (not mine) agreed to an MRI. And, if you can, contact a university medical center. They are usually interested