Hello everyone! So I went to my doctor on Friday because my pain is so bad and I'm not responding to the steroids anymore like I initially did with the Medrol dosepak. We know that I have some sort of Connective Tissue Disease, but not exactly sure now since my Anti-CCP levels, ANA were negative, RF and ESR were positive. My doctor checked a bunch of blood work on me on Friday so I'm hoping to have some answers soon. This can't be my life now...I have 4 little ones to take care of 😢

7 Replies

  • Hi Twinks, Have you looked at the possibility of having Charcot-Marie- Tooth bone disease in conjunction with connective tissues, given your problems? It makes for interesting reading, I have two autoimmune conditions, TB and Autoimmunethyroiditis. I also have a blood disorder, with possibility of it linking to a condition called MDRD. I've been researching my own health history from birth and slowly but surely am making the connections through the research.

    It's too long and complicated to go into it all. I've been posting on Thyroid UK and Headway since 2013. It's only as more health problems have arisen that I decided to start looking into it. I've had as many Eureka moments as I've also dismissed possible connections. Much if it though keeps coming back to the myelin sheath, the covering of nerves. Nerves send pain signals back to the brain. I had my first bone marrow biopsy in Oct 2012, which suggested Myelodysplastic Syndrome MDS.

    Since then, I now live in different place, but new lab blood tests several times have come up with MDRD on Biochemical blood test of CREATININE. I am at bottom of range on that one. But if your doctor has that tested for you, it may show something up. I'm also susceptible to urine infections UTI's and was told last year I have Thrombocytopenia.

  • I will definitely look into that. Thank you so much!

  • Hello Twinks80 . This must be scary. I once had drugs stop working for me and I remember being confused and slightly panicked. But there are so many treatments out there. Your doctor will help you find something else. In the mean time can you get help looking after your four? I got help with mine though I was always reluctant to ask. But I'm glad I did. Thinking of you.

    Cas xx 🍀🌷☀

  • My mom and my sister help me a lot when my hubby is working. My family has been true godsend! I'm keeping the faith that there is still hope and a treatment out there that will work for me.

  • *hugs* Thinking of you. ❤

  • Hi Twinks80,

    Sorry to hear about the pain. Hope you get some answers soon. Sometimes these conditions can take a while to get the right diagnosis but hopefully once you get one they can sort out the right medication for you,

    Best wishes

    Beverley (NRAS Helpine)

  • Hi Twink. I am so sorry you are in pain just now. I know the wait is awful but I am sure they will find the drug/s that work for you soon so you can look after your lovely family without pain. x

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