Neurologist now thinks I may have fybromyalgia. further mri requested again to compare to last one done several years ago.
Has anyone else had this suggestion before dx?
Hi Bee,
Your question; believe it or not; is at the heart of the only problem with the NHS; inefficiency.
I guarantee that they will not be able to find your previous scan to compare. This is why it is important to get a copy of your scan to take home.
Yes; many people are diagnosed with Fibro. first.
G
Hi, I have read quite often on these forums about people being dx with FM before finally years down the line getting the MS dx. From what I can gather from the information on the web, in the early stages of MS, the body can heal the lesions on the myelin leaving it undetectable by an MRI and even an LP, so because they don’t have anything concrete to go off the neuro will choose other possible dx. It’s a bit hit and miss really. If he suspects that it is FM then ask him to refer you to a Rheumatologist, as they seem to be the ones who deal with this more regularly. They will keep an eye on you and if you start showing other signs and symptoms at least they can always refer you back to the neuro. Hopefully it is not MS but equally don’t be fobbed off. You know your body and what you feel. Take care J x
I was seen by a rhuematologist who diagnosed fibro without doing tests, until I cried then he did the pressure test which I couldnt feel, so shouldnt have been diagnosed with fibro but still was. I asked for a second opinion, who was his superior who confirmed fibro, told me to take 8 paracetamol a day and discharged me!!! She did note I had joint hypermobility syndrome, but didnt tell my GP (both my sons have inheritited this off me and are actually getting help- I as a middle aged woman am getting none). I then saw my GP and stated my case and got sent to an infectious disease doctor to be diagnosed with moderate ME/ CFS.
Having had periodic numb hands feet and scalp with pins and needles, and eye pain in one eye, my GP has finally referred me to a neurologist.
Anyway, Im saying this because it sounds like you are having a typical experience, fobbing off until someone listens. Perhaps you could ask for PALS to attend the appointment, it may make them look again, and if not, then at least get you a more positive experience around fibro than I had!