Hello,
After 18 months of dizziness, a suspected stroke that wasn’t one and various other symptoms, I was referred to a neurologist.
MRI showed lesions, which I was told for someone of my age (50) might be ms but might be ‘just there’. I had a lumbar puncture which showed nothing current, but I have had a past ‘neurological event’.
My neurologist said that I have possible ms but he’s not sure. He wants to see how things progress and what my next MRI shows after 6 months. However, he is referring me to a team to assess whether I’m eligible for treatment and he is happy to diagnose some of my symptoms which he thinks aren’t ms as ms if it helps me to be eligible for the treatment!
I’m so confused, he’s proposing to take steps to increase the likelihood that I will be eligible for treatment for a condition he says he’s not sure I have which seems bizarre and illogical?
I’m finding it really hard to process the uncertainty. Does anyone have any advice please
Hi Laney. I am still awaiting diagnosis so can’t answer from experience of ms only experience of neurologists. After having seen a brilliant neurologist who took my concerns seriously I had to move and saw another neurologist who was highly dismissive and told me I couldn’t have an mri and was probably just suffering migraine and somatoform disorder. Having moved again I am now awaiting another neurology appointment as my doctor was concerned about my presenting symptoms. I would say that you seem to have found a decent neurologist who is taking you seriously so please take his advice and be happy that he is concerned. I hope everything goes well for you.
The wheels grind slowly, so the more groundwork you can do up-front the better. There’s a difference between being deemed eligible for a treatment and committing to taking it, and who know what extra information you might have by the time you get to that point. I would accept the recommendation, press on and see what comes of it.
For what it’s worth, it sounds as though you have a good medical team around you, and they are keen to get things moving for you and keep delays to a minimum, which is great news.
By the way, if I had my time again (and I have been dx 20+ years), I would have wanted to go full-speed ahead on treatment as as soon as MS so much as looked at me sideways.
I am in the same boat. Although this for me has gone on for years.
I was told by my Neuro they have to be absolutely sure as the meds can make other conditions worse if they get it wrong.
I personally don’t think I have MS and they’re over looking something and trying to make it fit as I have optic neuritis
Tbh it’s all been a bit of a nightmare. I know this doesn’t help you. But I just wanted to let you know you’re not alone and there are quite a few of us ‘probably’ people out there
I am currently in hospital with possible MS. I got a Head and Neck MRI which was “bright” indicating that I have demyelination which is my first diagnosis.
I am awaiting a lumber puncture tomorrow to say for definite if I have MS.
It’s scary but hopefully I’ll get a full diagnosis either way. Like you, my neurologist says it is very likely that the demyelination is caused by MS but the lumber puncture will confirm.
