This is my first post on this forum and I guess i’m just looking for a little moral support and insight really , I’ll appoligise now for the length of my post…
I received a neuro appt through the post on Thursday and it got me thinking about my last appointment in 2011, which to me felt like a bit of a waste of time. I remembered one of the questions which was have you had any relapses? (Dxd as RRMS in 2010) No i hadn’t! It came down to everything i was feeling wasn’t a relapse just part and parcel of having MS, so i asked myself that question again Thursday and again i will have to say No i haven’t…the thing is i have only ever had 2 relapses, the first in 2008 and again in 2009 which led to the dxs in 2010. However it feels that instead of relapses some things are gradually just getting harder (Walking upstairs, standing for lengths of time, fatigue, twitches, cramps etc) i also experienced my first tremour this year after standing on the train to London and again on 3 seperate occasions.
My head went off thinking that maybe i didn’t have RRMS but a slow progressive form, this fear i know comes from watching my brother deteriorate rapidly with PPMS and who died this year after having his 1st symptom 7 years ago.
I am not on any medication/treatment and am trying to learn to manage the way i feel by basically by not exurting myself or getting stressed as this seems to make me feel worse. My concern i guess is that if i have a progressive form however mild but not dxed could i be missing out on treatment that may help me in the future???
I want to make the most of my neuro appt but always feel i am being neurotic due to the amount of things i want to squeeze into the 10 minute slot, only then to feel like they are not taking me seriously.
Hi Boo - I struggle with what is a relapse. Which I thought was a new occurrence that hadn’t happened within the last month and lasted over24 hours. Well when I emailed my neuro with my relapses he replied saying they were symptoms. I think he thinks a relapse is disabling needing steroids or hospital admission. I will ask him at next appt what is a relapse. However seriously if you are rrms and have had 2 relapses then get yourself on Dmds if not already as they slow disease progression and reduce relapses Neuro appointment - write list of symptoms/relapses and questions. Write the answers down. Do not bee rushed ask neuro to slow down if you can’t keep up. It is your appointment don’t worry about length of time other people waiting etc. take someone with you if able. If family or partner make sure they can ask questions too if they want. Also make sure you ask for copy of letter neuro sends to GP. Sorry if I sound like a nag- my husband says I am!!! But please please explore Dmds plus any other meds to help with symptoms there are some great ones out there Hope this helps Supportive hugs Min xx
Ps - you don’t need to apologise we have all been there. This site has been amazing for me the amount of support and advice I have had has been brilliant.
I am sorry to read that you feel as if you are in a difficult situation, but MS is a strange disease and just because you haven’t had many bonafide relapses, this certainly doesn’t mean that you won’t have any clear damage to your body. I have had MS for 20+ years but although I do have R/R I do seem to have symptoms even if I am not in a real relapse. You can ask your neurologist at your forthcoming appointment. But best of all don’t worry too much as this is a great way of lessening the damage. Best of luck, and HUGS.
I know exactly how you feel. When I was dx in 1995 nobody told me what type it was and as I was in denial I didn’t read up on MS so I was somewhat flummoxed by that question, “have you had any relapses?” (I hadn’t) I found the whole quick in and out with a neurologist so pointless that I didn’t go at all for the next 10 years.
The good news is that if they have misdiagnosed and you are a slow moving PP you are not missing out on any drugs because there are no drugs (yet) for PP or SP.
While it’s true to say there are no drugs for PPMS, I find the unapproved ldn to be remarkably effective. Take a look at www.ldnresearchtrust.org and see what you think.
Hi, Boo, first off, please dont feel the need to apologise for the length of your post........that aint long at all and even if it was, you need to get stuff off your chest. It`s what this forum is for afterall love!
From what you say, I think there may be a possiblitly that your MS is moving on to SPMS.
So you should be asking your neuro about this and if he/she thinks it could be, then yes, there are drugs (DMDs), which do slow down progression. Well that`s the idea anyway.
I`m really sorry to hear you lost your brother with PPMS. A word of consolation…I hope…RRMS and SPMS do not turn into PPMS.
Hello Boo and welcome, I have SPMS. I apparently have had my relapses without knowing that’s what it was. I have lived with this now for over 30 years and it’s only been the last 3 years when things started to escalate and so far the drugs I have taken don’t appear to do much for me. There is the possibilty that you have progressed to SP, but remember we are all different and ms moves at it’s own speed. Don’t lose heart and take into consideration what everyone has said. Oh yes and don’t let the neuro rush you, ask as many questions as you need to. Wish you well.