My MS journey has been a long time coming. First it was about proving to myself that that something was wrong. Then proving to my GP which was an awful lot more difficult. When I finally got to see a neurologist in the general neurology clinic, he decided to order an MRI, visual evoked potentials and lumbar puncture as thankfully for me some of my intermittent symptoms revealed themselves during the neurological examination. Two months after that first neurologist appointment I went back for the tests. Then another two months wait to see another neurologist for my second appointment for the results, which happened last week. I was interested as soon as I sat down whether they’d found anything from the MRI but he wanted to do another history and neurological examination first before letting me know the details. Apparently there were quite a few lesions on the MRI (9+) and the lumbar puncture came up positive for inflammatory markers. The visual evoked potentials were normal. He said he thought it was MS, in fact based on the test results combined with my history he was 99% confident it was MS but was going to refer me to the specialist MS clinic. He thought I’d had it for many years but seemed reluctant to offer a diagnosis, although he assured me he was capable of making one. I’d really like to know why, when he sounded so certain, is he stringing it out without giving a diagnosis? Could it be because the specialist clinic will be in a better position to say what type of MS it is? Frankly I can hardly believe two of the three tests came out positive as I thought I would never get anyone to take me seriously, but now I’ve got this close I’m so frustrated to be left waiting again for another referral! I haven’t had a copy of the clinic letter yet but would be very interested to hear if anyone else has an opinion on this experience or can figure out why he doesn’t want to diagnose it.
Hi Fuzzy The first neurology consultant I seen wasn’t specialised in MS and stated he was 99% sure I had MS as both MRI and LP showed a lot of evidence supporting my diagnosis. He didn’t diagnose me as refered me to the MS Specialist. I like you came out the appointment feeling slightly confused but once I seen the MS Specialist she diagnosed me with MS and things have moved along more faster with treatments and support from the MS Nurse. The consultant you have seen probably doesn’t want to give you a diagnosis when he isnt specialist in MS as it could cause more upset saying you have MS then it turned out you didn’t.They are just getting themselves right to refer you to the right person who will be able to confirm whether it is or not MS. I’ve been there and can totally understand your frustration but once you see the specialist they will be able to support you on your next steps. Hopefully your referell won’t take to long. Take care Polly x
Hi, I guess you`ve already said it yourself hun.
This neuro must feel he has to refer you to an ms specialist for a final consultation before you get a diagnosis.
I know its a pain hun, but perhaps there have been issues with other peoples diagnoses and hence the protocol has ensued.
Hope it isnt long before you can finally get to know what`s what.
luv Pollx
Thank you for your replies - I know that I just have to wait intellectually but there is this anxiety that I will never actually get there as the goalposts seem always to recede a bit further away just when you think you’re almost there. I nearly let it slip away from almost consuming my thoughts and then I get knocked back to more waiting and it all gets stirred up in me again. I’m not even sure how anxious I am - it’s just the not knowing that’s the worst thing Missing my partner very much as well who sadly died in August and was such a steady reassuring presence for me.
My symptoms have been a lot worse recently. My limp has got worse with more pain along with balance issues. I got electric shock feeling in my groin when I walk. It worries me as since my partner died in August the only thing I have left of him are our dogs as we didn’t have children. If walking the dogs is going to become more of an issue I’m not sure where it leaves me. My partner died in August, his mother died in October and it looks like I will likely get an MS diagnosis now just when I could have done with his support and it may well cost me my dogs. Don’t feel very optimistic about the future.
Oh gosh so sorry about your husband, sending you a (((hug))) just to offer support x
Hi Fuzzy You have really been through so much recently I’m sorry to hear about your partner and his mum. Is there anyone else who could help you with your dogs? Possibly take them out for walks for you? The way your feeling could be improve as if your diagnosed there is lots of good treatments that will become available to you. Keep a note of all your symptoms to share with your consultant and hopefully that may move things along. Sending you big hugs. Polly x
I already have a dogwalker on 4 days a week when I work but it’s really expensive (£24/hour) and a new expense for me to manage. It’s likely that I will move out of London where our dogs can have more space (they are energetic pointers) and presumably dog walkers are a bit more affordable. Fact is that there are times in life, where we have to take stock and reshape a new future for ourselves. It still comes as a shock to have these life changes all in bunched in close succession. Thanks for your hugs 
X Sarah