I hope this is ok to post here, but first i’ll introduce myself… my name is Jane, back in 1999 I was diagnosed with a very rare autoimmune disease, Takayasu’s Arteritis, where my immune system attacked my arteries, in my case my aorta. Had surgery and was doing ok for about a year then started declining healthwise… In the last year all specialists involved in my care except the neuro have said that I have MS which is likely to be secondary progressive after 18 years. Symptoms match but a brain scan, without contrast, didn’t pick up lesions on my brain only lesions on my spine. Next week I’m off to have my annual check with my rheumo in Hammersmith/London (for the TAK) and my local rheumo has asked for his advice re neurology up there. So that’s me and that is why what I’m doing is so important to me. It’s taken me 5 years to do a 3 year degree but I’m finally coming to the end and I’m doing my dissertation on invisible disability and the current disability benefits system. What else could I write about?!
So I’m asking if anyone would like to share their experiences for my research. It will obviously be completely anonymised on submission of the form. It would really mean so much to me if I can produce a paper that gives a true reflection of what those of us with an invisible disability have to face, whilst considering an alternative system of support.
Thanks in advance to anyone who can help!
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Jane how amazing you are an inspiration. If i can contribute just message me. xxxx
Hi Jane…A fellow Spinal MSer! I had PPMS like symptoms for 22 years and only got diagnosed last month…after seeing 17 neurologists. Cant say mine was an invisible disability, as it out me in a wheelie early on… But this new neuro guy said I am only the 2nd person he has ever seen with MS lesions on the spine (cervical and thoracic) I see him at The Walton centre, Liverpool. If you would like more input from me, then PM me. Take care chick. # Bouds xx Takayasus Artritis…I`ll google it.
Hi Bouds, Thanks for your reply :). Sounds like my battle for a diagnosis isn’t that unusual! My lesions are on the thoracic spine, cervical spine is just nerve root compression at C7 and C8. I’m just hoping that all the results that have been forwarded to my Hammersmith rheumo have been reviewed, even though I haven’t got a neurological appointment on this visit. It is so frustrating though, I have a pile of abnormal results and nothing to attribute them to. Ophthalmology, rheumatology, cardiology and GP are all of the opinion that it’s MS and have told me to keep doing what I’m doing, stay positive, stay active (I do some weights and yoga every day, without fail! No choice, without yoga I can’t move). Fatigue is so frustrating and you can’t describe it to anyone who hasn’t got it, but it shuts me down. Bowel ‘issues’, eye pain, only reflexes in my legs are the left ankle, no sensation in feet (stairs are fun!), legs are always spasming, muscles are always ‘engaged’… As for the Takayasu’s, my immune system attacks my arteries, in my case my aortic root, so it’s autoimmune. I only had surgical repairs, none of the meds they put you on except cardiac ones, and the rheumatology teams are saying that it cannot be causing all my other issues. Let me know if you want to fill in my dissertation questionnaire and I’ll pm it to you. I know you say your MS isn’t invisible but I’m happy to get as much data as I can especially if you are in receipt of any disability benefits. The current system is so demeaning, I’m hoping to add weight to the view that it is excluding those with disability from engaging with society, completely the opposite to its aims. Take care and thanks again for your message Jane