Waiting on diagnosis

Posted by jl1 @jl1, Thu, Aug 29 6:01pm

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!

Hi Jl1 …

This DOES sound frustrating, and terribly disruptive to your life. Not being able to read would be a huge loss for me as well. I'm sorry you're experiencing this mess!

That being said, this sounds familiar. Having a potentially critical event that all this can be related to should make this easier to figure out. Other neurological problems without a specific causal event are often hard to diagnose. In your case, there at least one clue I think, in what you've written here. I'll start for now with one question:

Have you been diagnosed previous to your car accident with Sjogren's syndrome?

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@wbuawxman

Hi Jl1 …

This DOES sound frustrating, and terribly disruptive to your life. Not being able to read would be a huge loss for me as well. I'm sorry you're experiencing this mess!

That being said, this sounds familiar. Having a potentially critical event that all this can be related to should make this easier to figure out. Other neurological problems without a specific causal event are often hard to diagnose. In your case, there at least one clue I think, in what you've written here. I'll start for now with one question:

Have you been diagnosed previous to your car accident with Sjogren's syndrome?

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No i think the car accident exacerbated my symptoms specifically my loss of balance and confusionn. Every sympyom had been explained and diagnosed as something else. The stress of my mom dying, made all of my symptoms much worseto where i am not able to work or drive.

I should also mention that the biopsies were lesions on my spine and a 3cm mass between my esiphagus and trachea.

Mu neurogist and incologist are leaning to sarcoidosis.

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My spouse has sarcoidosis. In the meantime …. hang in there! They should have biopsied these. If it's sarcoidosis, they'll see what are called granulomas in these lesions and that 3cm mass.

Liked by Lisa Lucier

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@wbuawxman

My spouse has sarcoidosis. In the meantime …. hang in there! They should have biopsied these. If it's sarcoidosis, they'll see what are called granulomas in these lesions and that 3cm mass.

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They did biopsy them. I had an open biopsy on my spine on 7/26. They just called and the results are in. I have an appt monday with the neurosurgeon that did the biopsy and tuesday with the oncologist.

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@jl1

They did biopsy them. I had an open biopsy on my spine on 7/26. They just called and the results are in. I have an appt monday with the neurosurgeon that did the biopsy and tuesday with the oncologist.

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Hi @jl1 – I also wanted to welcome you to Mayo Clinic Connect. Glad you are getting closer to getting some answers on a diagnosis. I'd you do by chance have sarcoidosis, you might check out this Connect discussion on that topic https://connect.mayoclinic.org/discussion/sarcoidosis-2c9d88/

How are you feeling about your upcoming appointment?

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@lisalucier

Hi @jl1 – I also wanted to welcome you to Mayo Clinic Connect. Glad you are getting closer to getting some answers on a diagnosis. I'd you do by chance have sarcoidosis, you might check out this Connect discussion on that topic https://connect.mayoclinic.org/discussion/sarcoidosis-2c9d88/

How are you feeling about your upcoming appointment?

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I am excited about it. The results tested negative for cancer! Mayo clinic received the samples from baptist hospital. Does that happen a lot?

I am very hopeful that after 7 months, i will find out what it is? I know my cns can't repair damage but i don't want it to get worse!!!

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Ugh! Ok. Now I have ANOTHER possible for diagnosis. I saw a neuroimmunologist at Duke Medical on 8/26. He mentioned Behcet's and Sjogren's but said before he can start treatment of rituximab infusion, he wanted to do some lab work and wait on my pathology report. It came back showing benign hemangiomas in my t10 vertebrae, so no cancer. He said the notes that he got from Duke mentioned CLIPPERS. Has anyone heard of this. The oncologist said it is a fairly new disease and is super rare.

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@jl1

Ugh! Ok. Now I have ANOTHER possible for diagnosis. I saw a neuroimmunologist at Duke Medical on 8/26. He mentioned Behcet's and Sjogren's but said before he can start treatment of rituximab infusion, he wanted to do some lab work and wait on my pathology report. It came back showing benign hemangiomas in my t10 vertebrae, so no cancer. He said the notes that he got from Duke mentioned CLIPPERS. Has anyone heard of this. The oncologist said it is a fairly new disease and is super rare.

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Hi, @jl1 – sounds like a bit of a long and winding road toward getting a diagnosis. A Connect member who is familiar with CLIPPERS is @becsbuddy, so I'm tagging her so she can interact with you about it.

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@jl1

Ugh! Ok. Now I have ANOTHER possible for diagnosis. I saw a neuroimmunologist at Duke Medical on 8/26. He mentioned Behcet's and Sjogren's but said before he can start treatment of rituximab infusion, he wanted to do some lab work and wait on my pathology report. It came back showing benign hemangiomas in my t10 vertebrae, so no cancer. He said the notes that he got from Duke mentioned CLIPPERS. Has anyone heard of this. The oncologist said it is a fairly new disease and is super rare.

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Hi @jl1, @lisalucier said I should get in touch with you. I was diagnosed with CLIPPERS about 18 months ago. None of the radiologists recognized the abnormal MRI but the neurologist thought he knew what it was. I had a brain biopsy that confirmed the diagnosis. CLIPPERS refers to an inflammation on the brain that can look like MS or Parkinson’s disease. My husband decided that he would take me toDenver to the university medical center because no one in our town knew what it was. Intravenous steroids changed everything for the better. I’ve been on prednisone ever since and got my first rituxan dose in Dec. ‘18. Now I get it twice a year. Things have gotten better.
What were your symptoms that led you to the doctor?
I hope they find out what’s going on with you soon! Stay in touch and let us know how you’re doing

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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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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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@jl1

Ugh! Ok. Now I have ANOTHER possible for diagnosis. I saw a neuroimmunologist at Duke Medical on 8/26. He mentioned Behcet's and Sjogren's but said before he can start treatment of rituximab infusion, he wanted to do some lab work and wait on my pathology report. It came back showing benign hemangiomas in my t10 vertebrae, so no cancer. He said the notes that he got from Duke mentioned CLIPPERS. Has anyone heard of this. The oncologist said it is a fairly new disease and is super rare.

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Thanks 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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Is 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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I 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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