i really need some help and advice.....

New diagnosis and before diagnosis
1

hi all, just want to thank you all in advance for any help you can offer…here is my story.

I have been ill for 6 years now, starting with pain in my neck. After many years of being fobbed off and my symptoms growing worse to the point of chronic pain, I was reffered to neurology. My neurologist was lovely and listened to all my problems and told me he thought I have either MS or Fibro.

My brain scan and cervical spine scan was clear, so i was told to go to Rheumatology for fibro diagnosis. I have seen the doc today, and he completely (and i do mean COMPLETELY) dismissed me and most of my symptoms…telling me i dont have fibro, or any other ms mimics, i just have a sore neck. When i questioned my other problems i.e, eye pain, nerve pain, difficulty walking, chronic fatige, breathing problems and many more…he had no answers for me and that was that, no help, no new treatment, just a kick out of the room.

I should also mention, that previous scans on my neck have showed a bulging disc as well as some of my other discs drying out…however the scan the neurologist ordered said there was none of that. I rang the docs secretary and she didnt seem to think it made sense, and have requested a copy of my old scans so my neurologist can compare it with my most recent one.

So I guess im just looking for a little guidence. After my neurologist said ms, i did quite a bit of research into it, as well as fibro, and to be honest i felt i completely fitted ms so i was quite suprised at the clear mri. I was wondering if it is possible to have a clear mri with ms, and if anyone has any advice on what the hell i do now!!! I had to leave work a year ago, im so ill, cant do anything, and i certainly cant be left like this! Feeling very low at the moment, just another doc who wont listen.

here is a list of some of my symptoms

sever headaches, loss of hand function, mild bladder and bowel problems, nerve pain (shooting pains, stabbing pains, burning pains) muscle aches, severe cramps, eye pain as well as blurred vision, difficulty breathing (feels like there is a huge rock on my chest) nausia, dizziness, slurred speach, some memory problems (cant get my words out a lot, forget the names of things etc) and some numbness when im having a bad day.

any help much appreciated xxxx

2

Hi Joryan I’m not diagnosed with MS but have made friends on here so am sticking around. Like you I have been poorly for a long time…I find (for me at least) concentrating on not what my possible diagnosis might be, but making myself feel as comfortable and as well as possible on the long road to a diagnosis is my priority at the moment. I hope this makes sense…for instance requesting meds that may help with certain symptoms so that I can function properly to do everyday things washing up,walking playing with my daughter. In order to do the above I’ve had to be persistent with G.Ps and that unfortunately is something that you need to do…if you can take somebody with you to your next G.P appointment. That person that you take with you doesn’t necessarily need to join in with your consultation but sometimes that support and ‘presence’ can make a hell of a difference to your G.Ps listening skills. I was that poorly at one point I took my Mum with me to see G.P and at my age you’d think I could sort myself out…all my Mum did was back me up as she had physically seen and heard my symptoms so no G.P was going to fob me off that day! So if you aren’t working due to illness then you need to go back to the quacks,see a different G.P Try take somebody with you But also try not to do a self diagnosis because you end up feeling worse and causing unnecessary anxiety…which I do often. Do you have support from family friends etc? Michelle xx

3

hi, thanks for the reply

I have a wonderful gp who is very understanding, the problem arises when i have to go see other doctors, it was a rhuematology doctor who was very dismissive. I do have a very supportive husband thankfully who does come along to doctors appointments with me as a bit of back up, but unfortunately couldnt make the last one…i find that doctors are nicer to you when you have someone with you. I dont feel i have ever self diagnosed…just listened to what my neurologist thought about my problems, and as both the conditions he said it would be have turned out negitive on tests, im quite lost as to where i go next.

As far as medications go, all I have ever been offered is painkillers…which can help to take the edge off when im bad, but never help to prevent the problems, as I haven’t been properly diagnosed with anything, I cant take anything else, nor would i want to. taking medications for an illness you dont have could cause futher issues…i would much rather get to the route of the problem and fix it, or at the very least manage it.

Anyway, the doctor who completely dismissed me just yesterday rang me this morning and told me the initial results came back on my blood and i am severely vitimin d deficient, and i have a perscription to take for that (he wants me to take 15 tablets in one go) so hopefully that will help with the pain, and urge doctors to figure out whats going on

thanks for your reply