Hello everyone, i am not a newbie here but its a long time since i posted about 2 years. I am finding things a bit rough at the minute and could do with some support from others who understand. I first started having problems in 1995 and was told by the first Neurologist i saw that i was probable MS, saw a second Neurologist 7 months later who is an MS specialist and he also said probable MS, in fact his words were more than 90% certain and he was being generous to himself allowing that percentage of being wrong, i took that to mean he was actually even more certain than the 90%, sorry i,m waffling. I went on to have an MRI, evoked potentials and a lumbar puncture all of which were normal but he was still certain MS was the cause, over the years have been told, " just because we cant see it doesn,t mean it isn,t there", and when i asked if this could be anything else he said no. So i got on with things as you do not much choice really, anyway have had 3 more MRI,s since then the last one being in 2010 as the last couple of years have been tough to say the least, it was normal apart from some " age related changes ". In summer 2010 i started having problems with one of my shoulders becoming painful on the advice of Neurologist saw a Rheumatologist who ruled out RA, Lupus amongst other things, had Physio and things have just gone downhill, the pain and discomfort i am in at the moment has me wanting to sit on the floor and cry like a toddler, trying to get any help with an unconfirmed diagnosis is a nightmare, was referred back to the Neurologist they said they couldn,t do anything for me, my GP has been great and she referred me on to somewhere else and i saw the Neuro there last wk, but whilst waiting for the appointment to come through was referred urgently back to Rheumatologsit in January saw him, once again he rechecked things from before, all normal except my ANA was " slightly positive " but was non specific and when broken down was negative and not accountable for my symptoms, what ever that means : ). Also one of my LFT,s was outside normal range, having that rechecked next week. If your still reading thanks, my heads in a whirl with everything, anyway saw the Neuro last wk and she has started all the investigations from scratch, i guess at the moment i,m just so fed up with it all just needed to get it out somewhere. The last 18 months has thrown up joint pains, muscle tightness and weakness and the pain is horrendous trying to get anything to help i feel like i,m flogging a dead horse, and also for the first time i,m actually thinking the probable MS diagnosis may be wrong. Behcets has been in my head for a number of reasons over the years but this last few months even more so and i have asked them to look into it for my sanity as the thought terrifies me it has been mentioned to me once before when i was investigated for coughing up blood so it,s not something i,ve plucked out of thin air i also have a skin condition which is common in Behcets, i know it can mimic MS and can be hard to distinguish between the two, MS is something i,ve got my head around over the last 17 years and i,ve never doubted the experts until now. I read a lot of posts on here and always take an interest in Polls posts so if your reading this Poll, you have my every sympathy with your numpty Neuro,s : ). Thanks so much for letting me get this off my chest, think i just need to know others understand.
Marie