Anyone continually being diagnosed with more and more auto-immune diseases?

A bit of background before my questions - In the past 38 years, sinc having Glandular Fever at 16, GPs/Consultants have queried that I had MS, ME/Chronic Fatigue, Fibromyalgia, Underactive Thyroid to name but a few conditions!

A lymph node biopsy of permanantly swollen glands in neck 2 years ago was 'inconclusive', despite bloods showing inflammation/infection. Around the same time I was told I had Lichen Sclerosis, (Dermatologist said he was 100% sure), and then on the next visit he told I didn't have that!

However, the conditons I HAVE been diagnosed with over about the last 4/5 years are : Mixed Connective Tissue Disease, Morphea Scleroderma, (biopsy 'confirmed' apparantly), Raynaud's Phenomenon, Fibromyalgia & Osteoarthritis, (told I require 2 hip replacements), and was just told a couple of days ago that my latest flare-up might be Polymyalgia Rheumatica!

"It's 'normal' to just keep getting more and more auto-immune diseases/rheumatology issues," I was told very matter of factly by the GP I saw, (which I've read quite a few times too,actually). An ESR blood test can confirm Polymyalgia Rheumatica....but she wasn't willing to do it as she said "it was done last year"!

My Soft Tissue/Lupus Nurse at the Rheumatology Clinic had recently told me to ask my GP surgery to do Thyroid Functions Tests and ESR/CRP blood tests - so I made a complaint yesterday, and these tests are being done next week.

My questions - 1) How many of you have unfortunately just kept getting more and more conditions? 2) Does everyone have issues with unsatisfactory medical care? Also, 3) Is there anyone who has Morphea Scleroderma which has gone on to become full-blown Scleroderma, affecting organs, etc?

4 Replies

  • Hi Larsonsmum. Ooer you have been throught the mill in the last few years. I had a number of auto immune diseases before I contracted RA. I had glandular fever at age 23 but only a mild dose, then went onto have thyroid disease which resulted in the complete removal of the thyroid in 2001. Breast cancer in 1994 which is also considered auto immune according to my cancer surgeon at the time.

    On the whole I have had very good medical care apart from a reluctance by my normally very good GP to prescribe a steroid injection when I am in the middle of a flare up. However one of the other GPs is very good about it and will do the prescription and the injection for me if I can;t get to my consultant.

    My GP is only concerned about my bones but when you are in a lot of pain, I'm afraid my bones have to look after themselves!

    Don't have Morphea Scleroderma so can't help with that.

    You perhaps need to consider changing your GP? Sometimes pestering is the only way we can get things done. Hope all goes well. LavendarLady xx

  • Hi LavendarLady,

    I've lost count of the number of people who seem to have begun their illnesses following Glandular Fever, whether it seemed to be mild or not. I believe that either we all got it because we already had a weakened immune system, or it weakened our immune systems and left us vulnerable to allsorts.

    You've certainly had a lot to cope with too, and I guess we all just get used to battles as an ongoing daily occurance. I understand their concern re osteoporosis, as I have a friend who has been on high dose Steroid treatment for 11 years for Still's Disease, (a rare type of RA), and her bone density is checked freqently.

    A lot of my issues with the care I receive are down to the terribly imprecise nature of all these ailments I think, and it can possibly be jumping out of the frying pan into the fire to switch GPs when you've a lot going on, so like you when things aren't going well I pester/persist etc, and often say I'm going to switch surgeries but never do. (Being rural, the one I'd have to move to isn't 100% perfect either, as I've friends who are registered there).

    We all just have to fight for our rights to decent treatment, I guess, and stay strong while we're doing it! XXX

  • Yes that can happen as once the immune system is activated it can be more sensitive. Coeliac Disease is another AI and our group recommends that anyone who doesn't feel better following diagnosis ask their Doctor for screening for other AIs. Likewise if you have RA Coeliac Disease can often be associated with that. So if you feel tired, foggy headed, have bowel problems, fatigue or a family history of Coeliac or Thyroid it's worth asking for the Coeliac Disease blood test to exclude it. The solution if you do have it is a strict life long gluten free diet. So the good news is no nasty pills are needed to load on any more unwated side effects like so many RA meds.

  • Thankd FionaGFG, agree totally, having had all these conditions/issues going on for what is actually 38 years, but why do we as patients know there is a connection, and the medical experts choose to trot out this 'no connection' theory?!?!

    I actually know I don't function well when I eat rubbish, and I've always fared much better on a gluten free diet, (though never been tested for Coeliac Disease, as don't believe I actually have the symptoms), but actually sticking to gluten free is not easy, and I'm also better with mouse size portions.

    Over the years I've been 10 stone, 15 stone, under 9 stone about 3 years ago,(when told my GP I was too skinny), and am about 11 stone at the moment, partly down to not managing to run/jog because of these two naughty hips which need replacing, (and same GP rather unsympathetically - under the circumstances - told me off for having put on 'a considerable amount of weight').

    I'm adamant I won't take many of the things offered to me medicine-wise, and get by on only the moment, but they don't always ease the pain/stiffness. Everything else offered was either addictive or made me a zombie, or worse, so I stopped them. This, of course, rather annoys medics, and you face their wrath by declining drugs!

    I can almost see there point, as you present with 101 different symptoms/complaints, (all connected for sure!), and then you won't take whatever they prescribe!

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