Autoimmune disease

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I am new to this site. I am a 65 year old female and I learned I had autoimmune disease when I was 35. It started in my knees. Had to have them drained. Since then I have had dry eyes, all my bones hurt me, very fatigue. Just recently I'm getting weird feeling in my body of weekness. I'm on no medication for this. Been only to a rheumatologist. 

Guess I should go to mayo   Can you suggest what type of doctor I should see for this. 

Thank you

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14 Replies

  • Posted

    So auto immune disease you've had since 35 is that RA.DRyanair eyes sounds like syrogens.

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  • Posted

    Hello Debbie and Francis,

    I have been diagnosed with fibromyalgia after 18months of searching for answers to the array of symptoms.

    I have become quite tuned into my symptoms, triggers and feel I can now differentiate between inflammation , swelling, pains, stiffness.

    I have found a clinic in London that specialises in treating chronic fatigue/me/fibromyalgia through nutrition, psychotherapy and an array of specific testing.

    I begin my treatment at the end of September . The thing that I was fixated on until recently was finding a diagnosis so I could treat my condition, however the key point I believe is that I have a variety of physical and emotional symptoms that basically interpret as physical and emotional imbalance.

    And the key to recovery is to correct those imbalances given the correct nutrients , physical exercise and emotional support.

    Unfortunately I do think for a lot of conditions the NHS is not equipt to support patients fully....ie the specific tests.

    I was wondering Francis, how are things going with your Fibromyalgia, are you still suffering with symptoms? Are you seeing anyone for treatments?

    Best Wishes

    Annette

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    • Posted

      Sounds like you have a good start. I live in a small town in Arizona not near ant specialist. But I did make a appointment with a internist. I need blood work for autoimmune disease first. Then go from there. Can't handle this much longer with the body aches and just not feeling well. Almost thought about medical marijuana CBD!

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    • Posted

      Thanks for asking. I see a local rheumatologist and just lately have seen neurologist Prof D Cruz at Guys hospital London who I super.my 2nd visit is in November. I also have sticky blood so on warfarin. This causes trippy jerky walking and involuntary movements. My Fibromyalgia and RA ate still troubless me. I am always in pain but some days are worse than others.My eyes will just want to shut and feel so I'll have to lay down. My thyroid raised so should be on meds too. What sort of treatment are you having

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    • Posted

      Hi Francis, I'm sorry to hear you have to deal with those symptoms.

      I've tried lots of treatments, supplements at home.

      At the moment I do infrared sauna which I really benefit from - helps with detox, relaxation .

      I've also found foam rolling greatly helps with stiffness and pain particularly in my back and neck.

      And L glutamine is amazing for gut inflamation (chronic ibs) and the fatigue symptoms - it reduces inflamation, dramaticly improves fatigue...however I'm still not healing.

      The Clinic is called Optimum health clinic in London.

      I spoke yesterday with them to discuss whether it would be suitable and the approach best for me .

      It's an all encompassing approach to healing so it deals with the emotional aspect , personality types, nutrition and tests that can help understand the malfunctions /deficiencies and therefore decide which treatments are best for you .

      I do recommend you check out the website..i don't want to live with my symptoms, I want to recover and enjoy my life to it's potential..i suppose I have high hopes but I do know I've picked the right place/people to help me do that. 😊

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  • Posted

    hi, yes does sound like all the symptoms of Sjogren's really. I don't have it but have Behcet's which is similar. It should be able to be diagnosed by a rheumatologist but if they aren't able to diagnose then you need a new specialist. I was recently prescribed hydroxychlorine also which took away a lot of the pain in my feet. 

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  • Posted

    Hi

    My advise to all of you,

    BE YOUR OWN BEST MEDICAL ADVOCATE!

    It took many years to finally get diagnosed with NEURO-BEHCETS. I went through many doctors. If they treated me like a "mental case", I found another doctor!

    I would tell this one doctor, I feel like I am going to pass out, etc.  She would run a CBC, TYRPOID AND LIVER FUNCTION  TESTS.  After about the 10 time of this, I asked her," DON'T YOU THINK WE SHOULD TRY SOMETHING ELSE?  YOU RUN THE SAME TESTS,THEY COME. BACK OKAY. BUT I  I AM GETTING WORSE!"  Her jaw dropped. "She sked, ' what do you think we should try?"  I told her,"You are the doctor. There is a  3 inch binder of lab tests - pick one!"

    She told me.later, if she need a medical advocate, she wanted me.

    I never gave up. I knew I was sick, not crazy! 

    There is no test for this disease. It affects Middle Eastern people the most. I am not. Look on the computer, do your own research, doctors don't have time!

    But keep pushing for answers, ask about meds to treat your symptoms. Do not " Suffer in Silence"!

    I wish you all well and the strength to keep fighting! 

    Cindy

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    • Posted

      Hi Cindy. I too have Behcet's. Not neuro Behcet's though all my worst symptoms were neurological. I am not middle eastern either. I remember a doctor in a+e in Moorfields eye hospital telling me I couldn't have Behcet's even after my diagnosis. He told me I wasn't the right ethnic group. He should have known better but didn't.

      I so agree with you, you have to be your own advocate. Like you it took me such a long time to be diagnosed and it was so frustrating. Kept being told I was stressed I was anxious blah blah. You have to be so thick skinned.

      Anyway I have been in remissiin frim the neuro symptoms for over a year now following interferon treatment. Has that ever been offered to you? I have started having active disease again but it has changed massuvely. No neuro stuff but now probkems with my feet. Plaquenil seems to be working for that. Hope you are as well as you can be x

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