I've just come home to a letter from the consultant rheumatologist which says my test results for vasculitis and my head MRI are negative and therefore I have ME! (Myalgic encephalomyletis). I am lost! My worst symptoms are peripheral neuropathy which causes pins and needles in both arms and legs and weakness such that I spent all last week indoors and couldn't even hold a mug of tea, (crisis indeed if you're English). Then there's the cognitive dysfunction - impossible to concentrate and memory haphazard, rendering me unable to work).
OK, so I definitely have SJS, (blood tests say so), but the peripheral neuropathy and cognitive problems are down to ME? I thought you got those with SJS?
If this makes sense to anyone, please let me know,
Yours confused and feeling rather greedy at having three diseases, (what with the cervical spondylosis),
Louisa
Hi Louisa :)
My guess is that your rheumy doesn't know all the ins and outs of SjS. Mine says he is an expert but he also said neuropathy had nothing to do with it and I'm afraid I just don't believe him after all I've read in here.
I think they believe the NHS leaflets they hand out which more or less say that for most people SjS is a minor inconvenience. It does mention neuropathy and CNS involvement but says that it's very rare. I'm sure you'll have been given one sometime.
All I can suggest is that you do some print outs of articles about it and ask for his comments on them at your next visit. I know docs like to feel powerful :( so I usually say " I'm not really up in the medical stuff - but I wnder if you could have a look at that - and see what you think?" You win some you lose some. I don't know how to go about finding specialist SjS docs here.
Take care - Scottie :)
Thanks, Scottie.
I'm wondering whether to bother questioning it, as the chances are I wouldn't get any treatment either way, (I'm just on Plaquenil now).
More to the point, I've just realized I've posted this in the wrong place and it should be under 'Diagnosis and Tests' sp I'm going to go and have a look in there...
Louisa
x
Just for the record, ME is also known as Chronic Fatigue Syndrome in North America.
While many doctors seem to think this is another of those "maybe" or "made-up" diseases (the way some of them see fibro), the clinical criteria for CFS/ME is well defined, and actually matches many people with SjS, the major difference being that there is no positive lab or x-ray finding.
This is an excellent article about CFS/ME : http://www.cfs-news.org/me.htm
My 19 year old daughter has Chronic Fatigue Syndrome (ME) and has really suffered over the past 3 years. My rheumy is leaning towards mild sjogren's for me but I noticed a lot of the symptoms relate to what my daughter feels/suffers.
I was a the gP's with my son this week and mentioned to my doc about whether my daughter could also have SS. He does not know that much about it but got her in for a blood test straightaway (after I dragged her out of bed) and we are waiting for the results now. Does anyone know if it is common for mother and daughter to have SS?
Hi divingdancer :)
It is possible for a mother and daughter to have SjS but it's uncommon. Autoimmune conditions don't seem to be directly hereditary but if there is AI stuff in the family some kind of autoimmune disease is more likely - but not necessarily the same one. It's a bit confusing.
Good luck with your daughter's results. i hope she doesn't have it.
Take care - Scottie :)