Lupus

So i got my results back from my lumbure puncture and it was normal except I have 4 obligoclonal bands im so scared and nervous does anyone know what this means has anyone dealt with cns lupus

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  • Hi Mariar,

    Are you able to discuss these results with your doctor?

  • Im waiting to see my neurologist i did talk to my doctor she didn't know what it was

  • Do you have an appointment lined up with your neurologist?

  • Yes i have to wait until next month which im going to try to get in sooner im pretty scared i dont know whats going on havr you ever heard of this happening to someone with lupus i thought o bands where connected to ms

  • I'm afraid I am not medically trained so I cannot comment on your test results. I hope that you are able to see your consultant soon and that they will explain this for you.

  • Ok I have paired oligloclonal bands. Somewhere here I did post about this as I was given a great link on NeuroTalk which I pasted here.

    Firstly I assume they took a blood test straight after your lumbar puncture? No bands means in either blood of spinal fluid means things are normal, paired bands (same amount of bands in blood and spinal fluid) indicates a systemic process - very broad but includes Lupus. Different amounts of bands between blood and cerebral spinal fluid can indicate MS. So it depends whether the four bands from your spinal tap were matched in your blood I believe.

  • Thank you

  • Thank you for the link im very stressed i feel alone everything seems to be going wrong im not even 30and all this happen i feel like i was giving a death sentence when i was diagnosed with lupus now all this is happening sorry im rambling

  • Don't apologise - it must be really hard for you but you really aren't alone. I was diagnosed with RA four years ago at the age of 48 and that was hard enough. Looking back I had lots wrong even as a child and throughout my young adulthood but it's only now that I can make some sense of it all. In a way I think it was easier not knowing about autoimmune diseases and just assuming it was all just me.

    Like yours my symptoms and signs are very confusing. Some days I think it's all just a figment of my imagination - other days I'm sure it's not. Like you I'm waiting to find out more as I have a new rheumatologist. It's pretty nerve wracking. The best thing I've found is to assume if it's anything major I would be told sooner rather than later. My neuro symptoms are the worst for me - RA seems to have upped and gone but I don't like the bits that remain much either! Hugs x

  • Thank you so much im trying not to stress im trying to quiy smoking and now i really have to i have 4 babies so its really hard i have cried my eyes out all day i have an appointment with my rheumatologist im hopping he cam explain things for me and maybe start treatment for this

  • Quitting smoking is hard but really important for your health and your kids so hang in there. Best of luck with your rheumy apt I hope it helps you sort stuff out. Tx

  • Hi i just wanted to update you my neurologist is sending me to a specialist she thinks it is in my cns which is scary it i guess i will have to deal with it thanks for listening ti me and for yiur advice

  • Hope everything turns out good gentle hugs

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