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Lupus v MS

Posted , 4 users are following.

pam_87693
pam_87693

I did EMIS what happened you shot me out did I say something wrong?

0 likes, 4 replies

4 Replies

  • Jan999
    Jan999 pam_87693

    Posted

    Pam it's difficult to respond to this. If you need to contact a moderator you can do it without posting here.
  • pam_87693
    pam_87693

    Posted

    Matron I have looked up Lupus UK and there is a 5% chance that we could have SLE without a positive ANA. My ANA was over 15 years ago and it was positive however I found out from UCHL that they think my body turned agains me in 1974! So much longer ago than when I was tested. Also every doctor at UCHL was sure I have SLE too, I am still awaiting the bloods from Oxford which could take 6-8 months as they are done in small batches. Injecting MTX which I do knocks out the ANA anyway. So the tests to Oxford will be very specialised. I would suggest you look up Lupus UK Matron. Also 0mm Schirmer is the gold standard by Prof Hughes and I have been severely dry eyed all my life.  
  • pam_87693
    pam_87693

    Posted

    No EMIS didn't shoot me out I have just checked! Computer trouble I think! If anyone has the neuropathy associated with SS/SLE which can feel like MS they need to be seen in neurology. There is a very good reason. With all drugs there are side effects. In the case of SS/ SLE if you are persuaded to try off label preparations NOT in THE BNF or on Patient which is a UK NHS run site. Please ask your GP or consultant before buying anything off the internet. Actually I would avoid buying any drugs off the internet. In the case of an off label product L-N which is used in MS it will make those with SS or SLE worse. 
    • Jan999
      Jan999 pam_87693

      Posted

      pam as a nurse I wouldn't be so foolish to buy drugs off the internet. I don't know why that has been mentioned. Just to add I am also a nurse prescriber.
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