I went too see the consultant yesterday who had told me anyone can be cured from fibro if you want it bad enough. Anyway he's now decided I only have fibro & not MCTD so has said I should come off all of the drugs I'm on for that. I asked him why he thinks that two rheumys, a neurologist & opthalmologist are all wrong. He said my ana is only 1:320 with homogenous pattern and my ESR is only 24 surely it's the disease modifying drugs that are causing everything to stabilise. I asked him if he'd contacted the previous drs & he said no. One of the issues with my MCTD was a lesion on my brain which caused issues with my eyesight so I asked him about that he said its just one of those things. He then said he may be wrong in which case he'll restart everything if I get sick again.
This scares the pants out of me as if it goes wrong in my brain, lungs, kidneys or heart the damage may be irreversable & he's not going to be doing any blood test or other monitoring so by the time I recognise the symptoms as not my fibro it could be too late.
So who do I trust? Either the previous 4/5 consultants are all wrong or this one who's supposed to be a rheumy expert is.
All I do know us the extra worry/stress is not good as I'm in agony today & had a rubbish nights sleep