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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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My primary sent me for an mri after an auto accident in February caused me to have a concussion. Abnormal brain mri. At that time i had little to no symptoms. I had slight loss of balance and hearing loss. I was working and then going to spend time with my mom. She had dementia and i spent three first 3or 4 months in and out of the hospital with her. When she died on 6/5, the stress escalated my symptoms to where i can't work, i have trouble walking without falling, and can't drive because of double vision. So i now have on my team my primary, neurologist, neuro spine doctor, oncologist, and neuroimmunologist. I'm waiting on a call back from the last one. I want to ask him about his possible diagnosis of CLIPPERS. He didn't mention that to me when i saw him on 8/26. I just know that i need to start treatment asap. My symptoms are getting worse by the day!
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2 ReactionsI'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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2 ReactionsThanks for your repely , I'm still looking for more answers before I do head surgery for Chiari! I'll pray for you
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2 ReactionsIs brain biopsy the only way to know for sure if it is clippers? I am still recovering from the open biopsy of my spine.
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2 ReactionsI had to have more blood work. I have an appointment on 9/23 with my neurologist. Her nurse called me yesterday to send me for bloodwork before my appointment with her. She said this bloodwork needed to be done before I could start treatment which is rituximab. Is it normal to start treatment without a diagnosis? How can they know that it is the correct treatment?
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1 Reaction@jl1. I don’t know whether they do/can treat with rituxan before a formal diagnosis. Usually, the first treatment is IVsteroids and then oral steroids. Rituxan is a monoclonal antibody/chemotherapy drug. Have you looked into a 2nd opinion? Have you seen the MRI and discussed it with the doctor? You might try getting on Google scholar and look for CLIPPERS and see what you think or what questions you might want to ask. Or maybe go to a university hospital. Wish you best of luck
The neuroimmunologist that suggested it is from Duke Medicine which is part if the research department at the university. I have had 5 different MRIs and yes my neurologist explained it to me. Until the results from my biopsy came back, all of my doctors thought I had cancer and the neurological part was paraneoplastic. She referred me to Duke for the 2nd opinion.
It took six weeks but I finally got my biopsy results back. I had an open biopsy on t6, t10, and t12 vertebrae. The oncologist said it wasn't cancer, it was hemangioma and wasn't related to my brain issues which are central nervous system. He said I would need to contact my neurologist and see what she thought it could be. This was on tuesday.
I decided to look up exactly what he said it was. Hemangioma in the thoracic vertebrae.
This is what I found:
"Symptomatic hemangiomas represent less than one percent of all hemangiomas, and are more common in women than in men. If left untreated, symptomatic hemangiomas can cause serious neurological effects." This is from UPMC website.
Has anyone heard of this? Out of all the things that the neurologist mentioned, this is not one of them. Of course, she has been focused on paraneoplasm which it is not. This makes perfect sense to me. I think the oncologist could possibly be wrong. I think this is possible. I have an appointment with the neuro surgeon that did my biopsy tomorrow and I am going to ask him about this.
Any thoughts?
Hi, @jl1 - just wanted to let you know I've moved your post with your latest update to this discussion you'd started earlier, "Waiting on Diagnosis," so that others you were talking with here could see the latest. Glad that you are finally getting some answers with the hemangioma in the thoracic vertebrae. Good to hear you have an appointment soon with the neurosurgeon and can ask him more about this.
In the meantime, I think that other members in this conversation as well as members like @johnbishop @jenniferhunter may have some thoughts for you. @puzzledami also mentioned something similar and may have some input.
Do you have a list of questions for your appointment with the surgeon tomorrow? What are you thinking of asking him?
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1 Reaction@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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