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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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@jl1 -- There is an older webinar Q & A Video from 2017 that talks about hemangiomas that you might find helpful.
Video Q&A about Vascular Malformations and Related Syndromes
-- https://connect.mayoclinic.org/webinar/video-qa-about-vascular-malformations-and-related-syndromes/
Well, the neurosurgeon said it is not causing my neurologic problems. He said it would only affect my legs. So now i just wait on my 9/23 appointment with the neurologist. Ugh!
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2 ReactionsI have seen appointment on Monday with the neuroimmunologist at Duke. My neurologist said that the Duke doc says it is CLIPPERS. The appointment is to discuss treatment.
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1 ReactionHello there!!
I wanted to share a little of my story. I woke up in early April with left side rib & abdominal pain radiating to mid back. after several weeks of tests, I finally asked for an MRI for the mid back to see if I had a herniation. And to my surprise. I have 2 hemangiomas T1&T11. As weeks progressed, the nerve pain continued on my left side (sometimes right low ribs) and radiated down to my groin, I started having bowel issues, urinary issues, and weak legs with nerve pain in both. I get pins and needles through out the body, My heart rate started to be abnormal and I was getting chest pressure which made it hard to take a deep breath. So I feel like a huge mess. I have had MANY tests with only the hemangiomas showing up. 3 of my doctors said that isn't your issue, but what else is causing all of this nerve pain, bathroom issues, weak legs, tight chest?
T1 nerves are Heart, arms, chest etc. T11 is bowel, kidneys, ureter, buttocks etc. These are areas that I am having issues with. I feel like I am wasting so much money on testing when these could potentially be an issues.
It makes me very sad that for the last 5 months, my life stopped ( I was incredibly active with my 5 kids, working out, and just a go go person) now I am resting 90% of my day, I have bowel/gas issues, urinary issues, I developed PACs and SVTs, and My legs get very heavy and week when I am up to long. My doctors just keep trying pills to see if anything helps. So far, nothing has. I feel very let down and that I will just "Be" because none of them want to consider those as my issue.
I have been scanned from head to toe, beside the cervical neck. Blood work (only finding high IgA), urinalysis, CTs, HIDA scan, ECHO, EKG, Ultrasound of right side when all my pain is left, X-rays. Nothing shows up, but I continue to be miserable (yet thankful I am here) everyday. I am in PT, Chiropractic care and hope to try massage therapy. I continue with Gabapentin, muscle relaxers, naproxen when needed, and anxiety meds just to keep myself going for the day, but it is hard.
So I am not sure if you are having symptoms from them? I will say, mine do not always hurt in the the vertebrae, but somethings I get pain that sends me to my knees. It is all these other symptoms I and doctors are stumped with. I need answers so I can move on with my life. We need answers!!
Lastly, I do not like that these are dismissed for some people or any. I am nervous because they can cause micro fracture if they grow, and I feel that they can grow "pulse" when heart rate increases. After all they are blood vessels. if mine cause micro fracture, I could potentially end up with collapsed vertebra due to my family's severs history with osteoporosis.
I have a few more tests coming up and I will continue with Chiropractor/PT, but I might be asking for Mayo referrals soon. Going from Busy/healthy 5 months ago, to not being able to hardly function, that seems like a pretty big problem.
Did you get an answers?? I see your post was from over a year ago.
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1 ReactionThank 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 🙂
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2 ReactionsOpps! I forgot to mention my vascular hemangiomas are in my thoracic spine vertebra.
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1 ReactionI 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
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2 ReactionsWell, 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".
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1 ReactionI'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
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