Been off here for a while as I’ve been struggling with my symptoms. Spending most of my time recovering and resting from a little movement. Half an hour walk wipe me out for nearly two days last week!!! Well two (yes TWO) neuro appointments this week. One private as I decided to go that way after the nhs neuro was so dismissive of my symptoms and this ones an ms specialist to boot so he should know if it is or not. And then the second the day after with the nhs neuro’s boss because I complained after being told to “get on with my life” and that he doesn’t know what’s up with me or where to go from here! Sooooo. Here’s hoping we might make some progress soon Fingers, toes, legs, arms and eyes crossed
Hope you get some answers Good luck
Thanks gray Here’s hoping
Good idea but hope it doesnt add to confusion. I had a private neuro appointment in 2011 and was told definately not MS but I had delayed radiation myelopathy from radiation treatment I had for cancer in 1990.
I saw an NHS neuro in 2012 who completely discredited that DX and thought that I had had MS since 1991 and was now SPMS. After MRI and clear LP I didnt fit the McDonald criteria so he said I had CIS.
Went back to first neuro and said I couldnt have CIS because my symptoms got better after the attack and then a year later started to get progressively worse. That does not happen in a CIS case apparently.
I went to GP asked to be referred to the Walton Centre for a third opinion. He wouldnt as said I should just stick with the one neuro. I asked my GP “Well, do I pick which DX I fancy then and just accept the steady decline in my health!”
Hope you get some answers. I can sympathise. After the all clear this weekend from my MRI I have been handed back to my GP. Have now got to wait a month to see her before working out where we go next. Good luck
Crap ain’t guys After all the tests than can possible do and 3 neuros saying almost defiantly RRMS , my LP results didn’t show banding but did show inflammation , there now looking at something else ( socorotosis ) so more tests and more waiting.
Hi, just googled socorotosis and must`ve got the spelling wonrg, as it caame back not found.
Havent heard of it, has it got another name?
Moyna I was worried about confusion but took this decision after my original neuro didn’t listen to me, poo pooed my symptoms and told me to get back on with my life. (Half and hour walk last week knocked me out for two days nearly!!) I was only going to go private and organised this but after further frustration from the nhs I complained and ended up with an appointment for the registrar. If they come up with different options then at least I can cross off some things with more tests a little quicker hopefully
Yea sorry poll Sarcoidosis Gray
Good luck to you, hope you get some answers…don’t give up.
Good luck with those appointments. I hope that they make you a less stressed little puddytat x
Haha thanks reiki. I’m lucky that my little tweety pie is a good listener and keeps my mind off of things