treating multiple diseases

Hi, does anyone here suffer from multiple auto immune diseases? I have SS, RA and possible Graves. My Graves antibody test came back negative but both eyes are protruded slightly and I keep getting swelling around my left eye. I don't see how it couldn't be Graves but one weird thing is my body seems to swell and ache more on the left side of the body like lymph nodes, muscles and now my left eye. does that happen to anyone else here? Do you take the same drug to treat all of your immune diseases?

15 Replies

  • Hi, my 17 year old has hashimotos and sjogrens, she has been referred to an arthritis specialist too although it's never been explained why, it was just in a letter so we find out Monday I guess. She has different medication for each.

  • Poor kid. It's sad to to see a kid get these problems so young. Do you also have auto immune? I also have sjogrens and I see a rheumatologist for that and endocrinologist for the hyper thyroid.

  • Hi there, yes I think many people will have multiple issues. I started with diagnosed coeliac (24 years ago), then RA (3 years ago), possible lupus (3 years ago) on my gums, now SS ( 1 year). I had glandular fever about 10 or so years ago and since then when I'm m run down it flares on the left hand side. All lymphs from my neck to my groin increase and are painful. With's worst on my left side, eye and mouth. I have found Vit C every day at least 1000mg but now generally 2000mg a day really helps my immune system. I hardly ever have a headcold and lymphs are more under control. It's taking time to work out what's right for your body and sadly trialling things for er 3 month periods to see if it helps. My sister has Graves, Lichen planus, hyperglycaemia and now some strange skin rash which could be due to her meds for Graves which she is trying to sort out. So you're not on your own :). Hope you're able to sort the eye swelling must be very uncomfortable.

  • Glad to hear I am not alone in my symptoms. It's frustrating to search for post that match mine and turn up nothing. Thanks for the vitamin C tip. I looking into a good diet for my conditions. My stomach has improved since making changes but I'm hoping to improve everything someday.

  • This is very interesting indeed! I don't think that we understand very much about how the immune system works - and specifically how it can be compromised by factors from brain injury to exposure to certain viruses perhaps many years before...

    Part of gaining a useful model of what is going on will be ascertaining how far symptoms like very low vitamin levels, fatigue even pruritus are caused by the condition or a result of the action our brains are taking to cope with its onslaught. It seems to me that the 'elephant in the room' in modern medicine is this occult but central role played by our subconscious brains in 'body management'!

  • Hi - yes well as you know (from other communities) I have hypothyroidism, was previously diagnosed and treated aggressively for RA, which turns out to have been primary SS. As part of the latter I have small fibre neuropathy and ganglionopathy. Massively annoying symptoms are joining in all the time such as noise sensitivity and tinnitus. As a child and young woman I had alopecia, severe eczema and many other unpleasant symptoms and mystery minor illnesses.

    So I think I've had my SS since I was young - now 53 - with hindsight. I believe mine was triggered by being starved almost to death by my mum - not realising that she wasn't producing any breast milk for me, her first baby. Then, at 3 weeks old, she was told by a retired nurse friend, that I was almost dead, and they bulk fed me for months on semolina. Fight or flight and then being fed on solids months too soon, probably triggered my autoimmunity I reckon. The good thing is that now I know the cause and the diseases I can manage them better. The years of not knowing what was wrong were the really bad 'uns! X

  • Hi Twitchy, how are you feeling lately? That's interesting that this could have been brought on by malnourishment. I had no idea that was a cause. I also couldn't drink my moms milk because it was scolding hot for some strange reason and I believe they gave me goats milk or something like that as formula wasn't readily available in those days.

  • I think it was the fact that my tiny newborn immune system would have gone into overdrive, trying to survive despite no fluid or nutrients - and then to be bulked up on wheat based product wouldn't have compounded the problem. I did ask a connective tissue disease prof and someone on a Coeliacs helpline avd both agreed that this was the likeliest trigger. I don't have much autoimmunity in my family apart from Diabetes, although they all died young so maybe this would've shown up over time? TX

  • Hi Twitchy and CarolineLD, and anyone else out there who wants to listen! I have a question for you, and others in this community of ours. It may seem rather odd, too. I have a mixture of all these autoimmune diseases, and all the wonderful probs that go along w them: fibro, Sjogrens, RA, thyroid probs, tinnitus, active tremors, osteoarthritis, osteopenia, osteoporosis, and a million other things, some of which I have doctored for for years, and some of which have just been diagnosed. Here's the odd part and question: I was delivered at home by our family doctor and a midwife. I was slightly early and underweight. I was told that I was a "blue baby", never cried, was pronounced dead and laid out for the coroner to to also pronounce me dead. ( I'm assuming I didn't breathe for a while and was oxygen deprived.) My grandmother and the midwife refused to have this happen, and kept working with me until I breathed, but never cried. Just wondering if this happening might have played a big part in my autoimmune problems and all the accompanying problems throughout my life. Thoughts? Anyone?

  • Sound quite a valid hypothesis to me but then I guess you'd need to check it out with immunologist and geneticist really. Maybe there are studies that link prematurity or infant near death experiences with autoimmunity. I can only say that in my case I am absolutely sure it was the trigger for most of my autoimmunity,along with genes, early trauma and periods of hormonal change/surges.

  • Hi movingalong11 - and sorry for the delay in replying but I have been rather out of it recently and sleeping a lot... In answer to your point I think that they do do long-term follow up research on 'blue' babies (but would be unlikely to include those not born in a hospital I expect). This is a potential starting point:

    BW Caroline

  • I have multiple autoimmune diseases, RA, Lupus, Scleroderma, Raynauds, Sjogren's, Sjogren's Neuropathy, Hypoactive Thyroid, Clots in my Spleen, Lupus Nephritis stage 4 and inflammation of the Bladder lining. Other than that I'm ok.

    With your protruding eyes have you had your Thyroid checked? Swelling in Lymph nodes etc you may need a Lymphatic drainage which is a type of massage therapy that will help with the excess fluid causing the swelling. No the same drug does not treat all autoimmune diseases.

  • wow, you listed some things I'll have to look up. I did have my thyroid checked a few times. first it was hyper and now it's normal including the test for Graves but my Rheumy said that sometimes the test are sensitive enough to pick up the antibodies and she thinks I do have Graves. She thinks it was my immune system attacking the thyroid which caused it to become hyper and now it's working normally but with Graves, the eye swelling thing happens independently from the thyroid. I had an ultrasound of my left underarm because of swelling but the lymph nodes are ok. It seems to be muscular swelling instead. Not sure what happens now. I have an apt with a neuro opthamologist on Friday to check my eyes and a follow up apt with the Rheumy and Endo in December. I'll check into the message. thanks!

  • Yes, I do, and suspect that there are others that I haven't been diagnosed with. I have RA, fibromyalgia, SS, osteoporosis, Osteoarthritis, Osteopenia, active tremors, and a few more as well, and now wondering about Graves. Most of my problems are worse on my right side, but it is active on both sides. My rheumy, so far, has just treated me with Pilocarpine and Methotrexate injections, but if I didn't know better...which I don't, I seem to have more pain and tiredness since starting the methotrexate. I have many other problems that are treated with different meds, but the methotrexate and pilocarpine is all that I am given for the RA and SS. Do I need to be checked for Graves, or should that have been done when they checked for RA and Fibro?

  • Graves is usually identified by GP and referred avdctreated by an endocrinologist. So your GP would be the first line person to ask about this, and you would be tested by having your thyroid blood panel done and symptoms checked out, if they haven't already.

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