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3 years of mistery illness never away from docs,hospital and specialist no answers

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vicky89033
vicky89033

hi any advice please ive been in a medical maze for 3 years and my symptoms/illness have progressed to the point im in perminate pain now with more and more distressing symptoms. ive had so many things mentioned/suspected but im no nearer to a diagnosis.ive seen many specialist-reumatology,neurology,gastro,cardio,endocrine,ENT,eye specialist. it all started with balance and vision problems then gastric then fatigue and joint/muscle pain,now nerve pain and head,jaw,neck pains. my blood sugers have been all over the place. possible causes have been lymes disease-neg test,ceoliac-neg test,migrain-doesnt respond to meds,gaul bladder-removed 2013 then told wasnt that,thyroid-test ok,lupus ANA test neg,vitamin D and B12 ok, recently IGE high (given antihistomine for 2 weeks repeat test still raised levels) CRP high 17 and ESR high 29 previously normal levels, dry  mouth and eyes noted by GP and swollen saliva glands seen on scan-GP thinks may be autoimmune ? my symptoms are numerous and ive had so many conflicting ideas (most not followed up) ive baffled most doctors - thats the ones who listened ! any advice please and thanks for reading this long post

0 likes, 5 replies

5 Replies

  • margaret22116
    margaret22116 vicky89033

    Posted

    Hi please look at my illness profile. I have a lot of similar issues and have Behcet's which is similar to Lupus. Lupus cannot be categorically ruled out as far as I am aware on blood tests. I was diagnosed on history. Get a referral to an immunologist and you may get further. I had same experience of doing rounds of specialists who vame up eith nothing. Sounds to me like you have a form of vasculitis. Lupus comes into that category as do other forms of vasculitis.

    • vicky89033
      vicky89033 margaret22116

      Posted

      hiya thanks for your reply, i have an appointment next week with my GP. i will try to get a referral to an immunologist do i need to see reumatology 1st or aswell ? i have susspected lupus and vasculitis but they have been dismissed as ANA blood test was neg. i just hope my GP will do this refferal i dont blame her feeling as though she has sent me everywere as ive seen so many specialist and still no answers but as my health is so bad something needs to be done
  • margaret22116
    margaret22116 vicky89033

    Posted

    hey Vicky, certainly think you're on the right track. When I look at your post again I suspect it may be Sjogren's. I was referred initially to rule out Sjogren's. The swollen parotid glands dry mouth and eyes heavily point towards that. I don't know where you live but I would be more tempted to go down the route of an immunologist. I think it can be a bit hit and miss with a rheumatologist. But I do think in theory they should be able to refer you on.

    When I saw a rheumatologist they referred me to an oral immunologist who did rule out Sjogren's for me. In discussion with her we hit on the fact that I have Behcet's (similar but not the same). 

    The oral immunologist I saw was Pepe Shirlaw at Guy's hospital in London. I don't know if you are UK based and who would be close to you. There are centres around the country which deal with these diseases. If you give me an idea of where you are I can recommend someone to you. If you are outside the UK my knowledge is not good but I do have an online support group and can ask people on there. 

    Anyway, I do hope you get answers and the right referral. Do message me here or pm me if you'd rather and I will find any info I can for you. Margaret 

    • vicky89033
      vicky89033 margaret22116

      Posted

      hi thanks for your reply sjoprens has been mentioned by my dentist and eye specialist but thats as far as its gone my GP doesnt think there is any treatment even if it is ! i live in lancashire
    • margaret22116
      margaret22116 vicky89033

      Posted

      Well there definitely is treatment .....I know others with it. So sad you're having to battle on on your own with so little support or knowledge even from your doctor. I will ask in my help group who is from that area and where they get treatment.

      Also would be useful for you to get in touch with vasculitis uk. They are great and would probably send you an information pack you can take to your gp. I will message you once I know more x

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