I came across this forum at the weekend and have found it to be very helpful, but today I am feeling a bit deflated to say the least. To explain my history 10 years ago I was admitted to hospital with numbness in both my legs, I was given an MRI and LP at the time and was told it was Gullian Barre Syndrome, anyway 10 years down the line and in February I developed numbness down the left hand side of my head, neck and arm. I attended doctor and was immediately signed off work and for 6 weeks investigated for a stroke, which obviously it wasnt so again back to gp in April who then refers me to neuro. Saw Neurology at start of August, who goes through history and decides, mri, lp and evp due to be done to investigate for ms and advises if mri 10yrs ago had bern done to include neck and spine it might have ben diagnosed then. Also developed double vision 4 days after initial visit to neuro, so was back and given steroids at which point she advises it is looking more likely to be ms. Anyway had last of tests completed 2 weeks ago and now today feel quite sorry for myself tonight as I am getting fed up with the waiting to find out what is wrong with me. I also phoned my gp yesterday to ask if they had heard anything from hospital and was told last contact was 18th Sept regarding the mri but take it you know that, when I said no I know nothing about it she advised the gp had marked it as no action required so now I don’t know what to think. Sorry for the rambling but just wondered if anyone had any thoughts on this. Thanks In advance Yvonne
I am also left with a loss of sensation in my left arm since the numbness in february
Hi Von,
Unfortunately the diagnosis of MS is not a definite science. It works on the Sherlock Holmes principle “When all other possibilities have removed; the result, no matter how unlikely, must be correct”? Not really a satisfactory form of diagnosing but it’s the best they have.
I will say MRI technology is going forward in leaps and bounds and this will explain about the process; written by a doctor about his diagnosis http://www.mult-sclerosis.org/diagnosingms.html
You could go private for your first appointment; cost about £200 all other treatment etc. make sure on NHS.
Good luck
George
There are a lot of us here who totally sympathise with you. It’s horrible being stuck with horrible problems and no one wanting to help. Can you ring your neuros secretary and get them to ring you back.
Unfortunately it seems a common story that we have to constantly fight to get anywhere.
Take care and keep coming on here
xx
Hello and welcome Yvonne
I don’t know if it will help or not, but you may have inadvertently had a decent outcome 10 years ago because if they’d scanned you then and found evidence of MS, they still wouldn’t have been able to diagnose it because you have to have had at least two attacks for it to be officially diagnosed. What would probably have happened is that you would have been told “probable MS”, told a % likelihood of it developing into MS and to go away and come back if and when you suffered another episode - which is a pretty hard thing to live with!
Either way, dealing with limbo and unexplained symptoms is no fun 
From what you’ve said, it does sound that MS is a pretty likely outcome, but there are a fair few mimics that could still be the culprit, so try and keep an open mind.
As far as the GP & MRI go, do you know what that was about? Could it be something as simple as an appointment letter? Why not phone and ask to see the letter? (You are legally allowed to see and even get copies of everything in your medical file.) Alternatively, you could give your neuro’s secretary a phone and ask if the results are in. They won’t always tell you anything, but they can at least give you an update about next steps.
Hang in there.
Karen x
Thank you all for the information and the support :-). I phoned the doctors today to ask for a copy of the letter but was told I would need to come in next Tuesday to discuss before a copy would be given. I also phoned neurologist’s secretary to be told that they are still waiting on the Evoked Potential Test results which could be another week at least, but she said she will phone me once letter is done to let me know its on its way to the gp. Just need to wait a bit longer now but will hopefully know about mri next week at least. Thanks again for your support Yvonne Xxx
Hi Von, I know hun, it is really horrible not knowing what is causing our problems.
Hope you get to the bottom of it soon.
I`m still having tests…after 14 yrs of problems!
luv Pollx
Poll sorry to hear you still haven’t got to the bottom of your problems yet, you must be really frustrated with it all :-(. Hope you get a diagnosis sometime soon Xxx
Just wanted to say thanks for the support a quick update to let you know that I saw my gp today re letter he received about mri, it advised neuro was still waiting on lumbar puncture and evoked potential results but what he did tell me was that letter also stated I have multiple substantial white matter showing in mri which is indicating ms and other results would just be to back this up. Definitely got mixed feelings right now but do feel slightly relieved to know and as dr pointed out I have more reason now to tell the doubters to shut up lol. Thanks for reading and take care Xxx