Good morning all and a happy new year to u all As some of u may have read my post yest about my long awaited neuro app n his rush to get me in n out this morning I’ve woken feeling as tho I’ve had bout 20pts via IV thro the nite "/ n generally feeling meh! as u do he (the neuro) said yesterday that he was certain that it was NOT Benign High Intercranial Pressure - this is surely a positive??? He also said he was certain it was Not Benign MS - this is where I’m confused does that mean he’s ruling out any possibility that it Could be MS??? would that explain as to why he’s sending me for EVP’s just to double check that it’s def NOT MS Sorry to be a pain but as we all no it’s a very confusing stressfilled time in this ere limboland any simple explanations greatfully received lol (grasping simple things bit of a struggle atm mo lol) cheers Lou
The guy is talking pants as benign MS can only be diagnosed at least 10-15 years after MS begins. So why on earth he would refer to it, I really don’t know.
Fwiw, ruling out benign MS leaves multiple types of MS unaccounted for, but the best (and difficult) thing to do is to try and forget about it and wait until the follow up letter arrives. Hopefully that will make things clearer.
Karen, I just want to say how fab u r on this forum. U have alone helped me soooo much Happy New Year Love Claire xx
Thank you! And Happy New Year to you too
claire I totally agree Karen u r fab as u say tho I now face the difficult bit of trying to hang in n wait n hope that I get a copy of anything my GP gets Thanx again Lou x
Hi Lou, just wondering if it will help you to know I fully understand your angst!
Having spent many years (14) being told I probably had PPMS, to being given 95% dx of it, then being tossed in and out of the Spastic Paraparesis camp, and back to PPMS…(you couldnt make it up, really you couldn`t!) and then last Oct, to be told unreservadly that I DO NOT have MS at all!
I`ve had 4 MRIs, 2 LPs, 2 EMGs and other tests. Nowt showed owt! Except that I didnt have a tumour …that counts for a lot I know!
So my new dx is
Idiopathic spastic Paraparesis. Neuro said that 1st word simply means
we dont bloody know why or how`…his own words.
So that`ll do me and no more tests.
i do hope you are not left waiting eons to get a nil result, like me.
Thanx Pol I no from reading some of ur posts that u’ve been ‘messed’ bout I’ve got an appointment with Occi Health on the phone on Friday but I’ve not really got a lot I can tell her at the mo apart from that I’m off for more testing n to be wired up to the national feckin grid lol so lookin forward to that NOT Lou xx
Hi again. I was on the sick for a total of 8 months and had no diagnosis to tell them about. I kept saying
it is a working diagnosis of MS, as it was back then.
tell them that and also that you are still having tests.
Dont worry about saying this, as I`m sure it is heard often.