Fed up, when will I get a diagnosis 😔

Hi all, I'm a newbie and found this site while browsing, and glad I did. I'm hoping for a little advice, 😳 I've been under the rheumatology at Chapel Allerton Hospital for about 3yrs, was referred due to inflammation of the joints mainly shoulders that were affected, could not lift my arm ect, had X-ray and it had calcium deposits on 1, was sent to physio but I gave that up as made it worse. And was given the steroid injection, does help, anyway since then, I now get inflammation all over my joints, I'm diagnosed having mixed connective tissue. I have now got secondary Raynaud's, had a nail fold test, had enlarge arteries, was put on heart tablets, I have a positive ANA test, I'm constantly low on Vitamin D and Vitamin B9, I've had stomach problems (ulcers) also chronic fatigue, depression, hormonal problems, the disease has shrivelled my ovaries, so now have ovarian failure, and gone into menopause, which I think has caused the depression, 18mths ago they said there's a ? Over scleroderma, but nothing more has been done or said, don't seem to be getting anywhere, apart from me getting worse. For the first time in 25yrs I've gone on sick, as I'm struggling to do my job, I'm a hairdresser. 😓 I really want to get bk to work, but need a proper diagnosis n the right treatment to make me well enough. Sorry for the long post, but fed up now, and hoping for alittle advice on what to do, thanks xx. ☺️☺️

7 Replies

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  • Hi love, firstly im so sorry you feel so poorly! Flares suck big time! Mixed connective tissue disease is most definitely a real diagnosis love, I have undifferentiated connective tissue disease and I know exactly how you feel diagnosis wise, like being stuck in limbo with this thing that feels temporary. If you want any support or advice on having mixed connective tissue disease then I run a blog called the butterfly diaries, im on fb, twitter and Google plus :) feel free to message me and I will try help in any way I can. Also my friend runs another blog which is more established, The wolf and me, also on all social networking sites :) your not alone hunnii. Hold your head high knowing MCTD is just as much a diagnosis as anything else. I also have raynauds, chronic pain disorder and some brain involvement with my uctd :) cass who does the wolf an me is classed as mctd but a more complex version so your amongst friends :)

    Love and spoons

    Xxx Loubie xxx

  • Do you have scleroderma. You seem depressed. Have you said all that to your rheumatologist. It must all be treatable. I deal with things by diverting my attentiion from myself. I am sociable and have interests,

  • Have you had blood tests recently for specific antibodies? I was diagnosed with systematic scleroderma through antibody test . Hang on, things will get better. Talk with your doctor about your worries and try to rationalize the situation And stay positive. Iam sure you will find a way to manage this

  • oh my god that sounds exactly like me. I have positive ANA , a lot of symptoms but no diagnosis. plus early menopause.

  • Hi all, I've not been diagnosed as yet for scleroderma, they said there is no test to confirm, and have to wait for the symptoms, he said I have the same blood results, but said 95% scleroderma patients have my blood results, but my blood results doesn't mean you've got scleroderma 😣 been told I have secondary raynaud's, which indicates another underlying disease which yet to find. Calcium deposits were seen on my shoulders on X-ray. Just started with stomach problems, ulcers, acid ect, also whatever is wrong with me has caused premature ovarian failure which has destroyed me. I work as a hairdresser, been in the same shop for 22yrs, I enjoy my job so much n take pride in my work, the past 3 yrs have been hard, due to flare ups n raynaud's, but I dragged myself there, and finding positions and stupid ones lol to try n do my work. In the end my body gave up, and I'm on sick for the first time, suffering depression, which I know is caused by the menopause, but it's killing me. My doctor doesn't no much, feel like I'm a hypochondriac, and my rheumatologist, is useless to be honest, was seen by the scleroderma clinic twice, and they were great. Feel awful to ask for someone different, she's a lovely young girl but not getting anywhere. I'm actually under the care of professor emery at Chapel Allerton Leeds, but never get to see him. Sorry again for long post, I have no one to talk to about this, what would you guys suggest. Feeling 😔 xx

  • I also have reynauds and scleroderma it has affected my stomach (along with a list of other things) and I now have an ileostomy. It is a nightmare trying to get through to docs as half of them haven't heard of scleroderma. I also go to Chapel Allerton hospital. If you ask they should let you see Prof Emery. I see Dr Buch or Dr Del Galdo both who are brilliant. I think you'll have to be more pushy I know it's hard but it's you that's suffering. I hope this helps a bit I feel bad for you as I spent 7 years getting to where I am now. X

  • I'm surprised that they keep making you wait for treatment when your are feeling so awful. I have a diagnosis of RA but to me it's more like UCTD now. When last checked my ANA was negative so I'm way off a diagnosis of Scleroderma, although I have many symptoms of this disease at the early stages. I don't yet know enough about Scleroderma and how it is treated but it seems bizarre to make people suffer until it shows itself - possibly by damaging organs? And you already have ovarian issues and ulcers so why do they want to wait for more trouble?

    This said my rheumatologist explained that Scleroderma wouldn't be treated with immunesuppressants until it is more advanced anyway. I have tried four disease modifying antirheumatic drugs so far over five years - because RA is treated aggressively in the early stages in order to prevent erosive damage to joints. I had severe allergic reactions to three and couldn't tolerate Methotrexate finally. My RA symptoms haven't returned in my joints but I have lots of other symptoms which cause me as much distress, including Raynauds, dry eyes, GERD and severe parasthesia plus athlerosclerosis.

    Apparently Scleroderma can develop much more slowly so they wait and see the direction your autoimmune disease will take often before diagnosing whenever it finally makes itself apparent. It's really hardly surprising that this uncertainty and waiting causes us so much distress. I hope you can get to see professor Emery soon and can start appropriate treatment so that you can get your life back.

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