My MS journey started in April 2018 with optic neuritis. My opthamologist referred me to neurology straight away, but it wasn’t until August that I got to see a neurologist. We had a general chat, he took some bloods, and referred me on for an mri, which I didn’t get an appointment for until January. I got a copy of the letter my neurologist sent to my GP saying my mri showed several lesions in my brain and some in my spinal cord. I was then referred for a lumbar puncture which I had in April. Again, I received a copy of the letter my neurologist sent to my GP, saying I tested positive for oligoclonal bands in my cerebrospinal fluid and he would be contacting me to get a clinic appaointment to talk about my results. That was about a month ago and I still haven’t heard anything. I called the hospital to see what was happening and they said I was on the list but my neurologist is on holiday for the whole of July so it will still be at least another month. Just to clarify, I have seen my neurologist once in the whole 15 months I’ve been going through this, and talked to him on the phone once when my symptoms were so bad I just kept calling until he would talk to me. I have no idea what’s going on or if this is a normal amount of time to wait. I suffer from anxiety too, so this is hell and I keep thinking it must be all in my head and that’s why they aren’t telling me anything, but I’ve got test results to prove it’s not. Has anyone else been through something similar?
Hello Rosannee
Your journey to this point has been utterly interminable. I think there are other people who’ve had limbo times as long, but knowing that wouldn’t shorten your own wait at all.
Another thing that might not help, but just possibly could, is talking to PALS (Patient Advice and Liaison Services). You can find the contact details on your hospitals website.
I think you know it’s not in your head. It is probably MS, given your test results. But knowing that is not helpful either. Essentially you can’t count on it definitely being MS until the neurologist actually says so.
What does your GP think about all this time that’s passed and given the test results you’ve had? Do they have any means of making a complaint on your behalf? Or demanding an urgent appointment with the neurologist ASAP?
Has the past 15 months shown a pattern of relapse and remission? If so, you should definitely complain because you have been missing out on disease modifying drugs in the meantime. Even if you’ve not been having relapses, it’s pretty unconscionable that you’ve been kept waiting for so long.
I’m sorry, there’s nothing I can say except that you really have my sympathy. I do hope you get your neurology appointment as soon as possible. Once you have, if there’s another available hospital, preferably one with an MS specialist, maybe you could transfer your ‘care’ (I do realise what you’ve had so far stretches the definition of care somewhat) to them?
Sue
Hello, When I go to the doctors I always get told we just have to wait for the neurologist to get back to us. As far as I can tell I’ve been following a pattern of relapses. When I actually got to talk to the neurologist on the phone it was because my legs were so bad I could barely walk and I had terrible fatigue, then I got a bit better again, but this past week I’ve been feeling a lot worse again. I think I’m going to try and transfer somewhere else.
I now finally have an appointment on the 20th August, can’t believe I’m having to wait over 4 months after my lumbar puncture to actually talk to a neurologist,especially after I tested positive for oligoclonal bands in my cerebrospinal fluid.
i was very lucky because the general neurology consultant for my area knew how much an answer meant to me so before referring me on to an ms specialist he actually phoned me to tell me that my MRI suggested that i had MS but it would be confirmed following a lumbar puncture. i think i was a bit in love with him!! because he was so kind and calm.