Hi all, I saw my neurologist about 4 weeks ago. He said he is confident I have MS but my results from my lumbar puncture weren’t back yet and I would have another appointment in 4-6 weeks. All my other appointments at the hospital or with a specialist I got a letter with the appointment on, but not this time, when I phone the appointment line they ask which study I’m with. Could it just be a delay because its Christmas? I’m struggling to get up in time to get an appointment with my gp. I could go to my neurologists office to ask but I don’t want to pester them. Anyone know how you usually get a follow up?
Were I in your situation, I think I’d 'phone my neuro’s secretary and have a word. It could well be just a Christmas delay, as you say, but of course you want to know what’s happening, undergoing these investigations is an anxious time.
Here’s hoping the secretary can help, and please don’t worry about them thinking you’re a nuisance, you’re not, you’re a concerned patient.
I got my letter this morning asking me to phone and make an appointment when I phoned she said she couldn’t find a space for me until June so she has sent a request for neurology to fit me in earlier. Now I just have to wait for another letter.
He did tell me when I saw him last that he had a full patient load but he would squeeze me in.
I sure hope they fit you in before June Trixie Pix. 6 months is way, way too long to wait to find out your results and have that sort of diagnosis hanging over you.
This link will take you to the current best practice guidelines http://www.nice.org.uk/guidance/cg186/chapter/1-recommendations#diagnosing-ms-2 which may help you in pushing things along.
Don’t be hesitant to chase things up in the New Year. If it is MS you will want your questions answered and an action plan.
I was in a similar position to you several years ago. For me, it was that my neurologist, like most, hesitated to confirm MS in a letter or a telephone call, but had a waiting list so long I would wait months to see him.
I called his secretary and explained to her that although I appreciated their regard for my emotional care, waiting was worse torture. I was very aware that with my symptoms, a lumber puncture to look for oligoclonal bands, was the conclusive test. After this, I got a letter confirming bands found that were not matching in my blood, (proving inflammation in my CNS that could not be explained as a whole body infection), with a clear statement that he was writing after my direct request to know now, rather than wait for an appointment, that this, in his opinion, satisfied his view that it was MS.
For me, this was helpful, allowing me to get over my emotional reaction so that by the time of my appointment I could use it more effectively to ask questions. I hope you make the right decision for you.