Scleroderma & Raynaud's UK (SRUK)
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frustrated with doctors ?

I was originally diagnosed 3 years ago with mixed connective tissue , Raynauds etc and in the last 3 years my walking has become very limited. I asked for a second opinion from a rheumatologist whom I saw in May- he said it is not a rheumatology problem - he disagrees with the initial diagnosis and thinks it is neurological . I have already seen a neurologist and he does not think it is a neuro problem but I have been referred by the new consultant back to neuro and also to haematology- the whole process takes forever but my message to people is this- if you are not happy with the consultant ask to be referred for a second opinion - the new consultant took an hour to examine me and referred me on. although no conclusion has been reached yet I feel happier as before I went to see the consultant for 10 minutes once a year having waited for 2 hours and then she would say go away and come back in a year .

4 Replies

Hello Sylvia

Something about your trouble walking ESPECIALLY rings a BIG bell with me....+ I've spent a lifetime being the parcel in drs' passing game (pass the parcel), but finally was diagnosed 3, going on 4, years ago by a brilliant nhs rheumatologist, with what has turned out to be infant onset systemic lupus (with various secondaries inc simultaneous raynauds & erythromelalgia). Treatment is helping me hugely...I feel reborn...and at 60 my walking is now less limited than it has been in many years...and this time last year I was so lame and disabled that I'd secretly begun to dream about "removing" my worst foot...the pain was so persistent & agonising

Eg in the '80s I was examined by nhs neurology, rheumatology, ENT and pseudo-diagnosed, to little effects. In the '90s I was tested thoroughly for MS. and booked for a double cervical discectomy by a prominent nhs neurosurgeon (side stepped that via Pain Clinic denervations)....etc etc etc...all this left me in a vague sort of diagnostic/treatment holding pattern of gradually deteriorating health

The issues involved in my feet & leg probs have taken decades to be figured out. I've managed these probs pretty well, e.g. conscientiously worn be spokes orthotic insoles & sensible shoes since my teens. But it was the gradually worsening symptoms in my feet (& hands) that finally led to better/fuller diagnosis of underlying causes. The final piece in my jigsaw puzzle of causes was figured out last nov by a brilliant nhs prof ortho surgeon leg & foot expert: tendon tightening due to the progression of systemically un treated SLE. My global hypermobility had disguised this global tendon other drs are feeling rather sheepish that they missed this. Anyway, this hero prof prescribed a rigorous daily 40min physio routine, and it works! I'm now in my 35th week and can walk again....nearly as well as my healthier contemporaries. I'm sure that this physio + my lupus meds + ongoing conscientious lifestyle management all are making my walking less limited. But, whatever I feel as if some kind of miracle has occurred.

so, am wishing you the vvvvv best of luck..the kind of luck I seem to have had a bit of lately, after decades of playing pass the parcel with drs...and if I could I'd give you the energy and determination to keep seeking the drs who will help you...they are out there...I'd given up, but now have no doubt there is always some kind of hope

Take care

1 like

thanks so much for this- lupus was mentioned at one point and I have joined a local gym for people with disabilities where I can use a slow motion treadmill as I am worried I will soon not be able to walk at all- I have really got less mobile in the last year and every step is a tremendous effort. so you did your good deed for the day in replying to me. My partner of 21 years left me as he could not cope with my disability but I have recovered from that and at least if you are on your own you can please yourself what you eat, whom you see etc so I have recovered from that and now I can concentrate on keeping moving. all the best for the future Sylvia


I like your attitude! Keep that up! And take care!


Good luck and take care Sylvia. I too have trouble with my legs and feet.

And thank you Barnclown for your magnificent post, you have actually cheered me up and given me renewed hope that there is an answer out there somewhere.


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