Sticky Blood-Hughes Syndrome Support
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Recent Neurological investigations and Lumbar?????Ahhhhhh!

Just had in writing regarding recent Lumbar results, I am more confused now than ever???

Does anyone have this in common??? Their CFS shows matched oligocolonal bands but not suggestive of inflammation within the nervous system but passive transfer of a systemic inflammatory process?? Can anyone interpret or any suggestions??? Very confused....

5 Replies

Hi traceylou. I don't have this problem but found these two links on the internet which might be of some use to you? xxx


Hi Tracylou: If I received that in the mail I'd be on the phone before I ingested the first sentence. Call that doctor's nurse and ask for an explanation. Before you call her write down all the questions you have and leave room for you to write down the answers as she tells you. When questions arise as she is telling you - do not be afraid to interrupt and say, I'm sorry you lost me ... can you pick it up from....? As I hope you are aware, my diagnoses comes with memory problems and I need time to write as you explain. Start by confirming she has the clinical training to answer your questions. If she does not have the clnical training to answer you to your complete and thorough understanding tell her to have someone prepared to explain call you back with time available to explain. Don't be embarrassed to ask these questions nor feel like YOU are the inconvenience. This is the job and responsibility of the doctor and his office. Don't give up until you do get complete understanding. At no time is rudeness nessessary. You can very politely advise them you have no intention of going away until you get an answer because it IS THE MOST IMPORTANT thing to you. Then politely call daily. If you still don't have an answer, call twice a day. You don't need to do this with a "watch out or I'll be a nuisance" attitude. Just be firm, polite and determined. Always remember..there is business and there is personal. This is business. If after a week I did not receive an adequate call back, I would be placing a direct complaint to that doctor and the way he runs his office. If I found him unreceptive, I would write a formal complaint to his superior requesting a change of doctors and why.

Good luck.

Smiles, hugs and prayers,



After pushing I finally booked an appointment for this Wednesday for a telephone consult, however I have just received the copy of the consultants letter aswell, I have tried to interpret some of the meanings but will need to be a doctor to understand the rest, I am so fed up with being told my situation is complex and most other tests are inconclusive....many thanks for your replies


Make an appointment with your doctor and have him tell you the findings of the test. Good luck hun.


I had a lumber puncture to rule out MS. I was diagnosed with mild MS after this procedure. My Rheumatologidt over ruled the Neurologist and said it was not MS but Hughes.



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