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Fri, Oct 4 8:04pm · Waiting on diagnosis in Brain & Nervous System

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.

Mon, Sep 9 4:14pm · Waiting on diagnosis in Brain & Nervous System

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!

Mon, Sep 9 9:35am · Waiting on diagnosis in Brain & Nervous System

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?

Fri, Sep 6 9:20pm · Waiting on diagnosis in Brain & Nervous System

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.

Fri, Sep 6 3:50pm · Waiting on diagnosis in Brain & Nervous System

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?

Wed, Sep 4 1:42pm · Waiting on diagnosis in Brain & Nervous System

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.

Tue, Sep 3 9:07pm · Waiting on diagnosis in Brain & Nervous System

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!

Tue, Sep 3 7:26pm · Hand tremors in Brain & Nervous System

Thank you. Thatcwas very informative. Usually it is my left hand and i think is when i am tired. Just like all of my other symptoms are worse when i am tired.