About

I’m a 30 something in London, living with rheumatoid arthritis, Ehlers-Danlos Syndrome, osteoporosis, bronchiectasis, PTSD, migraines and numbness down one side. Trying to make sense of it all and working out what I need to do to get better.

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8 thoughts on “About

  1. Like you I started getting migraines with left sided numbness after starting MTX.This started in december 2012 and is still going on daily even though I stopped the MTX in january.I too have seen a neurologist and she thinks it is a reaction to the MTX.Have had an MRI 8 weeks ago and waiting for the results.Our cases seem so similar. Rita x

  2. I am also a 30something (33 to be exact) living with RA and I’m hypermobile. I am 99% sure I have EDS, but I’m in Texas. Doctors in the US tend to look at each symptom individually instead of as a whole and keep shuffling me around. I’ve been in and out of hospitals and Dr’s offices my entire life. My rheumatologist has me on more pills than I’m comfortable with and I give myself Humira injections. I’m glad I found you. πŸ™‚

    • Hi Shelly, good to hear from you but sorry that you’ve spent so much time at the doctor and hospital – I can relate! I guess you know about the Ehlers-Danlos National Foundation? I was actually diagnosed with EDS by a geneticist at hospital when I was a child. Maybe the EDNF could advise on how best to get a definite EDS diagnosis? On a separate note, hope the Humira is working ok πŸ™‚

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