Is it fibro though?

Hello all, just asking for some support. Went for my rheumi appointment a couple of weeks ago and saw yet another consultant. She said as I didn't have a malar rash and my bloods were negative I don't have lupus. It's fibro. She said some doctors don't believe in sero negative lupus. I asked if it could be scleroderma because of my skin problems and she said too soon to tell. I told her that the previous doctor at the same hospital said a form of lupus. She didn't comment. Previous doctor said they wanted to reserve steroids in case it started to affect my heart. She said if the hydroxy didn't help then they don't want to try anything else and she will see me in a year! I asked if the lipoma in my brain could cause pain down my head, neck and back and numbness in my back and tingling and she said well if it swells then it's possible. Not her remit though I need to go back to the neurologist. Should I ask my GP to refer me back to neurologist? I feel I've been put out with the rubbish and left to wither. When I mentioned my skin lesions she said what did the dermatology say? Again, nothing! Not her remit I'm guessing? Can't get sense from any one person. Spine pain see spinal surgeon. It's treating each problem individually that has nearly killed me in the first place. Rant over.

11 Replies

  • Oh dear Hippykar - it is so hard being undiagnosed for autoimmunity for precisely this reason - everything gets treated separately and it becomes a matter of Fire fighting all the time. I think you need to go back to your GP, especially if they are helpful, and explain that you are tired of all the firefighting and want to see someone else from rheumatology, neurology or immunology - who is interested in a bigger picture.

    My last rheumy wasn't interested and was dismissive of the idea I have a connective tissue disease. He dismissed all my neuro issues and signs in spinal fluid as "not his area". Six months later I saw another rheum who was preoccupied by my neuro symptoms and wrote to my neuro about them. I tell you this to show the big disparity of what we are told, between colleagues from the same specialist profession within a short period of time.

    Mind you even a clear cut diagnosis isn't giving me access to further treatments now - and being a drug intolerant patient compounds their reluctance to treat with anti-rheumatic drugs enormously. But it does at least help that doctors have to learn more about Sjogrens and at last see a bigger picture so I'm taken more seriously now. And most of all it helps my confidence because it's been such a lousy fight to get here that I've learned to trust my symptoms over medical opinion. All my hunches have been proved right so far but I'm learning to choose my battles very carefully now. Especially as my neuropathy is flaring and I know it needs treating as immune mediated so got to think how best to get to try Mycophenolate or IViG infusions - against the neurologist's advice.

    Best of luck. Twitchy x

  • Thanks for your reply. I'm seeing a Chinese acupuncturist and he said the spinal surgery has damaged my nervous system. This controls all sorts of different parts of the body. He said my immune system was low before and my body couldn't tolerate what they did to me. I've had more sense from him. One of my GPs said it's rediculous for anyone to say I don't have a connective tissue disease and yet the rheumatologists do! Don't know where it's all going really and that's what's so hard. So far these are the things that have been mentioned; morphea, scleroderma, lupus, CPS, srojens, MS, osteoarthritis, fibro. None confirmed as such. X

  • Perhaps you need to do a bit of research to find a group who will listen - you don't HAVE to go to the local hospital, you can be referred elsewhere if you have a helpful GP. A hospital with recognised lupus specialists might be a start - and LupusUK can offer that sort of info.

  • Hi there thanks for your response. I hate to say that I have been referred to a specialist hospital for which I am very grateful. I think the problem is they just don't know at the moment. This understandably makes me difficult to treat. I was told by a private doctor that this is how my body reacts to swelling. I guess it can be given all sorts of names but at the end of the day it won't take away the pain. X

  • It is hard I know. The main thing that I'm learning is that going from doctor to doctor - private, NHS, second opinions etc can be a necessary evil for a while. But once you've found a rheumy in a hospital who seems to be open minded and reasonable in their approach, then continuity becomes pretty important - at least for a while. If you are moving from person to person and they can't work together and discuss your case, the likelihood will be that important results and information you have provided will get lost or be disregarded. Prior to my rediagnosis of Sjogrens I was having to hold the reins myself and flag things up - often to no avail. Now these symptoms and results are being mentioned in clinical letters about my and I think this might help you too.

  • Hi Hippycar,

    Unfortunately with conditions like lupus, you can often do need to see various different specialists because of the wide range of symptoms that you can present with.

    Some lupus specialist centres sometimes run multidisciplinary clinics where you can see specialists such as nephrologists, dermatologists and neurologists in the same place.

    If you are unsatisfied with the current diagnosis and treatment plan from your rheumatologist, it may be worth asking your GP if they can refer you somewhere else for another opinion.

    You could ask to be referred to a lupus specialist. If you let us know whereabouts you live, I can provide you with details of any lupus specialists who may be near to you.

  • Thank you for your reply. I've been seen by about five different rheumatologists at Bath hospital for rheumatic diseases. I paid privately to go to the royal free in London. I've seen one one another local hospital. That's not to mention the dermatologists who can't agree either. They know this all kicked off in a big way after my back operation and allergy to the metalwork seemed to be the driving cause of inflammation. Now I'm left with the damage. Suppose they are waiting to see if my bloods change, stupid though because I was told by the rheumatologist secretary that they could tell just by looking at you whether it was sclero or lupus so I don't understand why it's taken six years.

  • Simply ask your GP to do a biopsy on your lesions right there in his office. That is how my discoid lupus started.

    In Feb. 2013 my GP saw my "itchy spot" and said right away, he figured it is alopecia, lupus. But he tried me on a few medicated cream, lotion and then a pill. After the fourth visit, he said, leta put this to rest and just do the biopsy. I said ok. Ouch! It hurt.

    By Aug.2013 I was sent to see a dermatologist who specializes in auto immune diseases and that was when it was confirmed.

    I never had the malaria rash but I sure do pimple up and itch like crazy whenever I hit the sun beams!

    Your GP is trained in doing these. Most don't do them, but they can.

    Don't be shy and ask him to prove that it isn't lupus. Ask him to at least put your mind at ease, if nothing else.

  • thanks for your reply. I had my first biopsy taken about fifteen years ago and was told it was a bit of morphea, slight skin change and nothing to worry about, so I didn't. Sort of vanished. Second biopsy taken after metal removal. This was inconclusive. Features of morphea but not entirely. They can't agree. Whatever it is, it's all over. I burned inside and out for two years. I then itched horrifically. I get numbness and tightening especially my back and hips.

  • That's like me. I said if us with lupus can be with one consultant. I know it would b a pain and a very big specialist because of all the knowledge they would need but we could get our scans etc done in lupus place AND THEY TALK TO THE OTHER SPECIALIST ITS NOT OUR FAULT 🙁

  • I totally agree. It's like they give up when you have an "incureable" disease. I think egos can't deal with it as doctors want to believe they can help everyone. When they cannot, either we get blamed, or passed off to another department. Their favourite phrase is to stay positive! They certainly don't like making you worse. Whose fault? They should all man up.

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