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Waiting on diagnosis

Posted by jl1 @jl1, Aug 29, 2019

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!

brayimee | @brayimee | Aug 4, 2020
In reply to @johnbishop "@jl1 -- There is an older webinar Q & A Video from 2017 that talks about..." + (show)
@johnbishop

@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/

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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 🙂

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brayimee | @brayimee | Aug 4, 2020
In reply to @johnbishop "@jl1 -- There is an older webinar Q & A Video from 2017 that talks about..." + (show)
@johnbishop

@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/

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Opps! I forgot to mention my vascular hemangiomas are in my thoracic spine vertebra.

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brayimee | @brayimee | Aug 4, 2020
In reply to @jenniferhunter "@jl1 A lot of hemangiomas are benign. I have a couple of them in my thoracic..." + (show)
@jenniferhunter

@jl1 A lot of hemangiomas are benign. I have a couple of them in my thoracic spine and I wouldn't know about them without an MRI as there are no symptoms. They are an area of blood supply within the vertebrae, and there is less bone there because of the hemangioma. If they cause weakness in the bone or if the lesion grows into the spinal canal, that could be an issue. I asked my spine surgeon about mine and he told me it was nothing to be concerned about. Essentially it is like a birthmark which is a lesion caused by a clump of blood vessels and those can occur on internal organs.

Here is a link that explains. https://www.ncbi.nlm.nih.gov/books/NBK532997/

This is a case report of a symptomatic hemangioma. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5088736/

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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

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movingtomadison | @movingtomadison | Nov 2, 2020
In reply to @jl1 "I have seen appointment on Monday with the neuroimmunologist at Duke. My neurologist said that the..." + (show)
@jl1

I 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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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".

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1 reply
cake | @cake | Nov 3, 2020
In reply to @resawaller "I'm sorry your sick! I know how u feel yr not alone! Answers are so hard..." + (show)
@resawaller

I'm sorry your sick! I know how u feel yr not alone! Answers are so hard to find.im told I have Chiari malformation and a cyst on my spine and that's cause ing me the same problems as you,but I also have the worst nerve pain on my left side! Pain meds dnt help,lyrica does a little! I've been sick for over a year now and the pain is too much! I don't want surgery on my head!! Hope you feel better soon, I'll pray for you!

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I'm pretty sure I heard that Dr Dan Heffez in WI specializes in the treatment of Chiari, if that would help you.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 3, 2020
In reply to @movingtomadison "Well, its been over a year since you posted, but I found you now... How are..." + (show)
@movingtomadison

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".

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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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