Quick question to try and sort my head out. I have been using this forum for the last 18 months and I am truly grateful for all of the advice which I have read. I don’t post much on here, but do read others posts and gain loads of advice and reassurance. I normally post my questions on th new diagnosis board but wanted to try and get someone elses opinion who may have been in the same boat as me.
In the last 18 months I have had an incident which left me without the use of my left hand side of my body and other strange episodes, which to be fair, in reflection, I could probably put down to anxiety of the whole diagnosis process. i had an MRI and lesions were seen on my brain and my spine. I saw a neuro who done an assesment and we talked about clinical episodes were MS might have been at play.
One such episode was where I was unable to urinate and this “passing” would take about five minutes to actually start flowing. Anyway, as this episode was probably 12 months previous to the one I was being treated for, my neuro said that as they never saw anything, can’t actually class that as an episode. He then continued to tell me that I need to inform the DVLA and insurance company and i now have a 3 year driving licence for my troubles. I was offered no treatment, as I have not fulfilled the criteria of having two attacks within a 2 year period and my treatment would not change, we would simply wait and see what happens.
I returned 3 months later to see the neuro and I asked him if I had MS, he said that it looks highly likely and a lumbar puncture would be a good test to do to help with the diagnosis. So fast forward 3 months and my lumbar puncture results came back as positive for O bands. With this, still my neuro reckons that I am still only highly likely MS and I may never go on to develop MS.
Am I being stupid or am I, undiagnosed but with a 3 year driving licence for “highly” likely MS. I know that my neuro is waiting for a further attack (I guess) but I feel a little isolated now in the world of healthcare. I don’t feel like I can speak with my GP as he has said that I am under a neuro now and also MS nurses in a specialist unit.
The neuro only wants to see me in 12 months time, unless I have a “disabling” relapse, where I lose the use of one of my limbs and i am to then go to the relapse drop in centre at the hospital.
I really don’t want to go on to develop MS and really don’t want another episode for the rest of my life, but if i’m honest and if I am undiagnosed, then I would like to get my driving licence back and be able to return to doing a job which I needed a 7.5 tonne driving licence for. I also have critical illness cover on my house and this would payout if I have/ am going to be diagnosed.
Anybody else been/ was/ is in this position and care to share their experience?
Is there anyway of viewing my medical records to see what has been recorded?
Thank you for reading