still not diagnosed

Hello all,

I am new here. Don't really know where to turn at this point. I know when I had surgery these blogs helped me through it so here I am! I guess I will start at the beginning...about 6 years ago I had a bout with extreme digestive issues, rash and fatigue. I was working a lot and summed it up to that. well I had a fibroid removed in September 2013 and have not been normal since! I have extreme pain and pressure in the left side of my head(had MRI came back normal), constant digestive issues, still have rash(comes and goes, mostly on legs), fatigue(so tired all the time), new symptom is joint pain! in the morning I cant even really bend my right hand until a few hours later. I reduced my high intensity workouts to walking and yoga. I am having a hard time even doing light yoga, my joints are so stiff. My left ankle is always swollen, had to stop walking all together. I have seen about 10 doctors in 6 years. PC did 2 blood test, first I had low blood sugar, high bilirubin and atypical reactive lymphocytes. second came back with positive ANA, very high she said. sent me to 10th dr. a rheumatologist. she rechecked blood and ANA came back negative, said probably fibromyalgia and sent me on my way with steroids and said see you in 2 months! I am so tired of trying to defend myself to doctors and friends. something is very wrong with my body! i have always been healthy. Oh did I mention for a year til present I have been on a strict diet, low-sugar, no-preservatives etc. I feel very alone and scared. I told someone for 4 years something was wrong with my reproductive system. By the time I found a good doctor the tumor was the size of a baseball. I'm very scared that this is happening again, no one believing me, things getting worse. they keep sending me to different doctors for individual symptoms instead of putting them together and figuring it out. I have blown through my savings for all these dr bills. I don't know what to do now. keep suffering in silence????

13 Replies

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  • Hello tsizzle, what a rubbish time you've had, if you have an auto immune disease the rheumatologist is the best one to be under as they seem to 'oversee' the whole picture. Fibromyalgia is one that could fit with joint pain etc, have you taken the steroids? Have they made a difference?

    For a long time I thought I was just getting old then I was struck with pancreatitis for no apparent reason this led to lots of tests and finally they came up with lupus and sjgrens and have slowly added more! Looking back I have realised it probably was approx 7years that I had been ill before it came to light.

    As you say you have used all your savings on docs bills, I assume you are not in the uk?

    Hang in there and hopefully you will get the answers you are looking for, this site can be comforting when you know we are all in the same boat with different areas of illness and pain.

  • Your tale makes me feel positively lucky even though I share many of your frustrations and also many of your symptoms including the GI ones. No one has told me I have Fibro or CFS because my inflammatory markers at least indicate that I do have an inflammatory autoimmune disease and my symptoms did present as classic Rheumatoid (RA) for a while. So I do at least have a diagnosis and also have Hashimoto's but it has been a battle because I'm very drug intolerant. My autoantibodies have been equivocal - negative ANA. I have seen the same rheumatologist since the start and also a neurologist and soon to see a surgeon about my stomach issues.

    I hate it when they keep taking symptoms in isolation. For example I've just had influenza A followed by pneumonia. I'm coming out the other side but my nerve pain is incredible and my joints and tendons are stiffening up everywhere now. Two of the GPs persist in telling me I've just been unlucky getting this sick but other of their patients have experienced this as well. Oh yes and have they also had months of poor health, are they non smokers who are gluten and dairy free, avoid sugars, exercise daily, have they also had the pneumonia and flu jabs and once it's over to they feel faint daily and have tremors and dizziness and dry eyes and widespread nerve and joint pain plus respiratory issues???

    Sorry I'm ranting now but the lack of holistic thinking really drives me nuts! Keep badgering and don't take Fibro for an answer unless it feels right to you.

  • Problem about "Lupus" - lots of people get these symptoms but if you are seronegative, you are mostly ignored as non-Lupus in Rheumatology which is fixated on antibodies. They are hugely invested on antibodies and they do not see any other ways (and I feel it is wrong).

    I think it is something to do with individual immune difference to explain the way your bloods "behave". I do get to hear that if you are eating loads of gluten, antibodies rise. You, on the other hand, are leading a clean living, no gluten(?), so antibodies petered out whilst you still have the disease. Patients generally know our body and we know which illness we may be suffering from. Only hope I could think of would be a genetic marker test for SLE. This should be made available for those who hardly got any antibodies (once positive, next negative, weakly positive cases etc). Those SLE antibody tests are not for everyone. Based on what I am reading, lots of people are getting SLE symptoms without positive bloods (hence left in limbo). Doesn't that say something?

  • That's really interesting Ferntree - when my symptoms first came on acutely I was five stone heavier than I am now and had a diet rich in gluten and dairy. My autoantibodies (Rheumatoid factor plus) were positive then. I had no idea that diet could influence our antibodies in this way - just assumed that losing a lot of weight and taking Methotrexate and Hydroxy had helped reduce inflammation dramatically and this in turn must have sent my antibodies negative. But what you say makes so much sense to me.

    Mind you I'm not going to start eating gluten and piling the weight back on just to aid rediagnosis! But when our symptoms and inflammatory markers continue to progress despite living such healthy lifestyles you would have thought the doctors would see a flashing light over our heads saying "more to this than meets the eye - autoimmunity!" Rather than punishing us by dismissal just because we are attempting to self manage our symptoms through making good lifestyle choices?

  • Hi Ferntree,

    yes no gluten, sugar, preservatives...basically anything that taste pleasant I don't eat! what really started all this was back in February 2014 I had an ear infection for 6 months! 4 rounds of antibiotics did not cure this ear infection. so being the holistic person that I am I used garlic and colloidal silver and the ear infection was gone in 4 days! But I was struggling with fatigue then and just thought ear infection really put me under. I guess I want to know the exact diagnosis because even though symptoms are relatively the same with lupus it also affects your organs. so I just want to make sure my kidneys aren't compromised. The doctor gave me steroids but i'm scared that will mess my stomach up even more. and she told me to come back in 2 months? How will she know the results if I don't see her again in 2 months? They are also trying to put me on anti-depressants. I really don't want that. so I start my day off with an anti-inflammatory smoothie: turmeric, ginger, berries, almond milk and dab of peanut butter. I only basically eat fruits(minimal), veggies and protein. I am also struggling with insomnia. Muscle twitching wakes me up frequently! I'm sure I have malabsorption. I just try to manage like all the rest of you do through diet and very light exercise. It breaks my heart that so many people are suffering here! But it is nice to know that i'm not alone in this...be well everyone!

  • I have lupus, mu partner has fibromyalgia. Symptoms are more or less the same. At least they've concluded that you're ill. Good luck 🍀 for the future.

  • Hi lupie,

    you are lucky in a sense of having a partner who understands what you are going through. Luckily my boyfriend has dated a girl in the past with Lupus as well so he is very helpful and thoughtful. It has become a task just to open a pickle jar! I guess im struggling with not being able to be active like I was. I was a dance instructor for most of my life and to have the thing that brought me so much joy ripped away is very hard. But we adapt and we keep living. I just hope that through all of this we keep ourselves doused in faith and peace about it all. I know I have a long road ahead like all here and I hope that I find the grace and dignity that so many of you here have to deal with this! Be blessed and well:)

  • "But when our symptoms and inflammatory markers continue to progress despite living such healthy lifestyles you would have thought the doctors would see a flashing light over our heads saying "more to this than meets the eye - autoimmunity!" Rather than punishing us by dismissal just because we are attempting to self manage our symptoms through making good lifestyle choices?"

    Twitchytoe, I cannot agree more. Consultants tend to have their own subjective "type" of patients for SLE, if you don't look like his "type", they think you haven't got SLE without listening further. Partly, that's their over-confidence and partly, it's a form of delusion suffered by so many Rheumy doctors. Their confidence will be shattered to bits once genetic marker tests would be available for patients to get tested in the future. 80% of people who were dismissed and told you got no SLE would turn out to be they had it all along. Actually, your inflammatory marker sounds like worth investigating..people with autoimmune genes are far more prone to malignancy as well..something GP needs to be aware of. Happy Easter to you xx

  • Hi tsizzle It sounds very autoimmune / SLE..steroid does help but there are so many side effects depending on the dosage. It's good to hear that your GP is concerned enough to have prescribed steroid for you. Autoimmune diseases are far more common now than a decade ago..Rheumatology ought to start to treat far more patients as any autoimmune conditions could damage organs. Why they stay obsessed over antibodies? Just crazy. They would need to wake up and start listening to their patients.

  • I am sorry you are dealing with this, and I do understand alittle of what you are going through.I am in the USA...I started having problems in my late teens back in 1986...I was passed from dr to dr.I had one very high ANA pos. ..Rashes..raynauds..hair came out in spots.Swollen joints. FATIGUE..severe joint pain..migraines, you name it.I was always basically dismissed at the end of the day.The problem in the USA is alot, and I mean ALOT!, of drs do NOT listen to patients. They put too much basis on test results, instead of patient observation.It is awful.I had 3 pos ANA tests, one very high, the other two borderline high, plus a plethora of symptoms, before getting DX'd after suffering horribly for more then 10yrs. ..I dont put alot of faith in drs or their testing systom.Plus, they don't like when we come in with a suggestion of our health or what it might possibly be.Some have such egoes they think they are God.Hope you get to the bottom of this soon..xx

  • I live in the good ol USA too! I don't even barely listen to doctors anymore. It is very frustrating. I feel like screaming at them I KNOW MY BODY BETTER THAN ANYONE! but I feel it would just fall on deaf ears. There are so many factors with the human body that I feel aren't taught in med school. I just try to stay positive as much as possible, some days are harder than others. Also why were the last 3 doctors so quick to try and prescribe pills without telling me why? for instance I am having horrible digestive issues. She gave me some meds that made it worse! so I went the holistic route and bought slippery elm and pepsin and she completely talked down to me about it..funny thing is my herbal remedies actually worked! so I guess the joke is on her! But I will keep parading through these doctors offices and I wont stop until I find the doctor for me!It so unfortunate. I really thought once I got health insurance I would find a good doctor who really has empathy for patients. EMPATHY maybe that should be taught in med-school. I am sorry that it took so long for you to get the help you needed. it is a shame really. we deserve wellness, every last one of us all throughout the world! be well everyone

  • Hi Sizzle

    Sorry to read of your health struggles. I have an American penfriend who struggled for years to get a Lupus Diagnosis. She was very ill and because she was working here in UK she went to a Lupus Expert in St Thomas's Hospital and got diagnosed!.

    I would recommend you stay with your Rheumy as a Consultant , steroids are not usually prescribed for Fibro as they are anti- inflammatory. Have they helped?. Looks as if your Consultant was trying to treat the illness and sometimes it's trial and error. I've had to do this for years!. You may need a stomach protector like Losec if you stay on the steroids. Hope you feel better soon. X

  • Sizzle, according to the poll located between us. You leave near me in US...I have the same problem about my Rhreumy, she doesn't listen, she's in look at my blood results. First, I was developed rash, I went to dermatologist, he gave me 3 times of predisone, I gained 20 lbs. The rash won't go away completely, I asked for biopsies test. And it's lupus, I'm seeing rheumatologist, I'm treating but I'm ready to see the second opinion.

    I know your post was 3 months ago, I'm currently see rheumatologist at allergy and rheumatologist in Seminole FL.

    Hope you found a solution in last 3 months or continue on it.

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