LUPUS UK
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Update on my sensory tests and lumbar puncture re CNS Lupus

Hi everyone. I finally got some results back from my tests. I have been recently diagnosed with CNS Lupus with a potential high chord lesion. The results came as raw data to my consultant so he could only tell me limited things. My sensory tests came back normal which is great. With regards to my lumbar puncture, I have unusually high CSF protein level (0.65) which he said could indicate my lesion but it was out with the realms of his expertise and is contacting my neurologist to get an accurate picture and a plan of what autoimmune surpressents I should start. He also said my cholestral was high but he was not worried. Can anyone offer any thoughts or has experience in high protein levels? It will probably be 6-8 weeks before I hear back from the neurologist. I'm taking hydroxy, tarpentadol and nortryptaline and which I know is just masking the pain. I want to start my treatment.

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I don't have any experience with CSF protien levels, but if there's a problem - it might be worth going back to your GP and see if its OK to up the medications your already on while you wait for an answer.

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I’m currently awaiting rheumatology consultation, but have just had a lumbar puncture due to suspected cerebral bleed ( I had a massive pain on the right rear of my head that made me vomit) this shows elevated CSF protein of 0.55. Interesting. Hmm

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Hi. Finally had my consult and my elevated protein levels were not high enough to cause concern so they are discussing the next step for me. Please keep me informed of your results. I am interested to hear what your consultant says

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