Scleroderma & Raynaud's UK (SRUK)

Anne

I was diagnosed with mixed connective tissue disease including raynauds, sjergrens and pbc 2 years ago.. Over recent months I have developed multiple lesions in brain due to the inflammation and I am currently having chemotherapy. My doctors and nurses have been fantastic.. My mobility is now very limited,,particularly in my legs due to the brain inflammation, I have some paralysis, co-ordination problems,speech difficulties and very blurred vision:

Apparently this is extremely rare so I just wondered if there was anyone out there who had any similar experiences or who had had the pulsed chemo?

I have a fantastic rheumatologist and dedicated nurse who feel more like angels in disguise.

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Hi Anne

I was so sorry to read about your problems and although I cannot offer you any information which may help. I just wanted to give you some support by wishing you well. I am so glad your rheumatologist and nurse are so fantastic as it is comforting to know that people are professionally supporting you. I had mixed connective disease etc etc diagnosed 2 years ago but nothing like you have described.

kindest regards

Credit crunchie.

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Hi sorry to hear of ur problems I also hav mixed connective tissue disorder. Recently i had a liaison on the scalp which was removed and they told me it was lentigo milangant melona!! Just wondering what ur symptoms where regarding the brain!! I also suffer with swollen joints dry eyes and lupus too jane.

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Hi Anne, I am so sorry to hear the news. As I read through your ailments, it sounds a lot like Multiple Sclerosis - did your doctor do any testing regarding M.S.? Just a thought, just to make sure your issues are being treated appropriately - meaning to make sure they are not treating the wrong disease w/the wrong meds. The problem with auto-immune diseases is that you don't really know what it is until it is out of control - or so it seems. I do wish you the best of luck.

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Hi sorry for my slow response but I've been quite poorly. I'm improving now. The chemo is having good results. I was tested for ms- I had a lumbar puncture and it was ruled out. Thanks for your heklp and comments

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Aw dear Anne you are an inspiration to all of us and god bless you. We are here if you need us and we will support you as much as we can.

love Cindy xxx

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Sorry for my slow response Cindy. I've been quite poorly but much improved now. The chemo is having a good effect. Thank you so much for your support xx

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No, Legna, the lesions are a symptom of scleroderma. It says so in the association phamplet and my Rheumatologist told me, too.

Anne, I am keeping you in my thoughts and prayers.

Did you have pains in your head like sharp sickening quick pains?

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Hi GinaAnn. Sorry for my slow response - been quite poorly but I'm improving now with the chemo. I had severe headaches and had a lot of sharp quick pains in my face some time before I was diagnosed. I now get the sharp pains all over my body, particularly my legs..I have morphine to help now and it works wonders.. Think you for your thought and prayers xx

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Im sorry that I have nothing to contribute here except for a cyber hug... and lots of those are going your way.

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Sorry for my slow response - been quite poorly but the chemo is going well and I'm improving. Thank you for the hug - I felt it x

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Anne, i also have overlapping auto immune diseases. I have Scleroderma and poly myositis. I have had Scleroderma for 36 years and I have never heard of anyone having lesions on the brain. I had a stroke 2 years ago and had a series of scans and mri's done and the only thing that showed up was in the area of the stroke. Stay strong and keep a positive outlook. I will keep you in my prayers.

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Hi Sienna

Sorry for my slow response - I've been quite poorly but the chemo is helping so I'm a bit stronger now. Thankyou for your prayers - I can feel them all x

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