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Undiagnosed Neurological Condition

I had a scan three years ago and they discovered about five brain lesions. This scan was taken after I had swallowing problems, unsteadiness, writing problems, forgetfulness, breathing difficulties, and headaches. They took numerous blood tests, two lumbar puncture, an angiogram. I even had a biopsy. All of these tests came back negative. I have seen two different neurologists over the last three years and they disagree over my diagnosis. It sounds like MS to me but my neurologist believes I have CNS Vasculitus. However, he is not certain. He has put me on medication to treat vasculitus, but it doesn't seem to work. He doesn't seem to listen to me when I try to question his diagnosis. It is very frustrating. Has anyone had similar experiences?
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667078 tn?1316000935
I would see a MS Specialist. I wasted six months with a neurologist who missed the MS even though all my tests were positive for MS. She was not a MS Specialist.
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987762 tn?1331027953
COMMUNITY LEADER
Hi and welcome fellow Ozzie,

I honestly think you need to get a second opinion with the best specialist in your state on your CNS vasculitis diagnosis, your test results should not of all been negative and with CNS being one of the rarer forms of vasculitis it would be in your best interest to have the diagnosis confirmed.

I understand you've seen two different neurologist and if they disagree on the dx, what was the other neurologists opinion on what you had instead of CNS Vasculitis?

The international vasculitis foundation list 'Flinders medical centre' in SA on their website, so it might be worth considering contacting Flinders and asking their clinic which specialist they'd recommend for you to see and where you can get some support.

This is a very interesting resource on the various types of Vasculitis, it has a lot of other links that you might find worth reading too... http://www.uptodate.com/contents/vasculitis-beyond-the-basics

In regards to MS, there are many medical explanations and medical conditions that cause the same or similar symptoms, neurologically abnormal clinical signs and brain lesions, and all the specific details help identify the different types of lesions and more likely causation's.....if for example you had 4-5 tiny (1-3mm) non specific white matter lesions in a common brain location, they would more likely be the most common type of ischemic micro vascular bleeds but also keep in mind that CNS Vasculitis is associated with Transient Ischemic Attacks (TIA's), so the MRI evidence you have may be very suggestive or consistent with your diagnosis and not the type of brain lesions that MS causes.

The relationship you have with your diagnosing and treating physician is very important with chronic medical conditions, so if you are very frustrated with the limited information, support, treatment options etc that your getting from your neurologist, it would be in your best interest to find one that suits you better, so please consider seeking out a CNS Vasculitis specialist so you can at least be confident in your dx, dr and treatment for the future of your health..

Hope that helps.....JJ
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Avatar universal
Get a new doctor ASAP!
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