been on a bit of a whirlwind since March this year!
Symptoms started with tingling feet, then pain in backs of legs (only when sitting). Had to push for MRI (sister and dad had MS so alarm bells ringing) and eventually paid for a private one which originally I was told I had 2 lesions on back and 1 on brain. The MRI is then reviewed by a neurologist and told me the imaging department got this wrong, and there is actually only 1 area of inflammation on my back, and no lesions on the brain. This mistake was frustrating as had bit of a breakdown when my GP told me I had lesions in various areas, so to be told it was worse than it was did not help my mental state!
I tried a short bout of steroids (tablets) to try and bring the inflammation down but these made me very ill and I cut the course short by a couple of days as how bad I was feeling. The symptoms stayed the same.
The last couple of months the tingling had turned to burning in my feet and only when wearing shoes, I also had a small bump feel at the bottom of my foot and a feeling of bunched up socks, which I found out were big symptoms of Mortons Neuroma (foot problem) so recently had an ultra sound to check this and they couldn’t find anything wrong (was hoping they would find something). I have also been seeing a osteopath the last couple of months and this hasent really helped my pain in legs when sitting. i
My neurologist has now put me on Pregabalin which I have now been on for 2-3 weeks and has slightly eased the burning in my feet and pain in my legs but not enough for me to be symptom free again.
I feel like I didn’t give steroids a good enough go to really bring down the inflammation area on my back and by trying this again could help. Does anyone know if they can give different types/doses of steroids? is there any more benefit of having it has infusion rather than tablets?
Alot of what I read about CIS is that its a one off episode, symptoms die down and its then a case you need to wait and see if anything else happens. I understand if you just have one area and none on the brain its only a 20% chance of developing to MS? that gives me some hope. The problem I have is that the symptoms have not died down enough for me to get back to living my “normal” life, hence why I am wanting advice on wether to try steroids again.
My neurologist has also offered to refer me to see a MS specialist in Cambridge to get their view so I can get another opinion which I think I am going to do.
I appreciate your thoughts on this, this group is great and everyone is so supportive!
The Funk DJ