Well finaly starting to get some answers!

Had a letter off rhummie telling me and GP I have undifferentiated conective tissue desease , sjorgrens, raynaulds, fibro and chronic farptigue . He has not heard about my bowl issues yet so I suppose it might still change again but at least he has decided I can go back on hydrocholoquinne ,once I have my biopsy done ,I have been posting more on fibro site as I feel the pain I have is more in place on that site and I have also bought a mobility scooter so I can take my dogs out, when I feel up to it , my gps feel I have lupus and have been treating me accordingly as best they can and have been really supportive , just thought I would post and keep my lupus friend up to date ,I still read post here but don't contribute as much .x

8 Replies

  • Thanks for update, shadowswalker, everyone of your probs also come with lupus so how they define between the two, I don't know !!! But if you feel you identify more, with the fibro site, then maybe that's what it is. Enjoy your mobility scooter, my daughter keeps nagging me to get one. That's what we have to do, adjust and find another way to do things. Good for you... Take care and good luck with biopsy.

  • The scooter is brill I was a bit reluctant to the idea ,so I asked on fibro link what they thought everybody said go for it , it goes at 4 miles an hour tops I have two dogs one lab called shadow and my sons beagle Murphy who is supposed to live in Brighton but came to stay for a few months last October and is still here , my friends are all really cross with my son but circumstance can't always as we would like them,anyway the dogs get so excited when they see me get it ready to go out I only use it for that at the moment ,I still make myself walk to local shops just take a stick , but I really am glad I got it , it cost max of 30 p a night to charge so £9.00 a month tops to run a lot cheaper to run than my car , and that is really economical it does 79 miles to the gallon . I picked mine up fom the British Red Cross second hand it was only £300 and had been used for 4 days as they had been hiring them out to local buisnesses . I would recommend they are also fun once you get used to using it , any way thanks for your response Chris

  • Thanks for info, my brother has one and I am tempted to have a go on his. Has changed his life as, he has severe mobility issues. I think I feel defeated if I get one, but as you say, still walking to the shop. That's what I would do. "Use it or lose it'....re legs...haha..

  • Glad to hear you sounding so positive - great GP always helps; and getting a scooter to get out and about is a fab idea. Hope all goea well with what ever diagnosis you have :)

  • Thank you for your kind words , and yes the scooter is great x

  • Hi shadow-- this is pen727 and you wrote a reply to my question about Methotrexate and constipation, but I can't get it. When I click on the button, it goes to the replies--but yours isn't there. Anyway, sorry to barge in on your conversation here--it appears tho, that we are dealing with many of the same issues, and reading your posts and replies has been/is being so helpful and illuminating. "Illuminating" is not an exaggeration. pen x

  • Hi no my reply was wrong ,I miss read your post so I deleted it ,I could not tolerate methatotrexate , and unfortunately I have the opposite problem to you ,I am not sure which one is worse , I have no dignity when my bowel decides to play up ,and I listed drugs etc that would make your issues even worse the only thing I would say is tell your doctors sooner rather than later I would however suggest dioralyte as that should re balance your bowel , my brain fog is a pain , I have been on hydrocholquinne and that drug is brilliant no side effects makes me feel wonderful when not on a flare , I have been off work since jan , once I have a couple of more test done the plan is to put me back on it , sorry for the mix up on my part hope you get the help you need .chris x

  • Hi Shadowswalker

    Welcome to the undifferentiated connective tissue disease club. It must be a relief to have a label !. It does mean your Consultant should keep a good eye on you as having this diagnosis means we can develop different symptoms that need monitoring. I hope your seeing someone about your bowel and your very brave to get a mobility scooter , it feels a big downward step for me like 6161 has said!. Do keep posting on here as your health experiences will help us fellow sufferers. Hope you feel better soon. X

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