not sure if I am doing this correctly as this is my first message.
where do I start… Hubby diagnosed on 21/01/16 after 9 months of imbalance, bouts of extreme fatigue and time where he feels at any moment he could collapse .
The care plan is steroids after a lumber puncture , which seems pointless as MS has been given as diagnoses already … he doesn’t fulfil the NICE guidelines for DMT…
he is being referred to MS nurse
mentally I don’t think he can wait any longer and needs to start some form of treatment … Everything takes so long …his life has just been on hold for nine month and no light at the end of the tunnel… Has anyone had success with steroids ? Or is this just really to try and appease when there is nothing for some in an acute state …
Good advise re the GP , will differently do that as i found out today that the wait for the MS nurse is 18 weeks… the neurologist has stated what type…so i suppose its progressive unless he get a remission…not sure.
yes the diagnoses was immediate based the MRI and acute symptoms on going for a year now.
to be truthful i don’t really understand the different types, is it that you need to go into remission and than relapses to be offered DMT treatment ?
I’m not as up to date as I could be with regulations etc, but you have to have had more than one relapse within a certain length of time (two within a year?) and then be more or less functioning in between, to be considered “Relapsing Remitting”. (That’s what I have, and most MS-ers come within that category.) I had one incident in the January of 2013, which was initially mis-diagnosed as a stroke; and another relapsey thing in the May of 2013, which got me put on the DMD which I’m on (Rebif). And as long as it keeps working, I’ll keep doing it! I had steroids to recover from my first relapse, and it did do some good… but the side effects were very noticeable for me - they all hid behind the door on days 1 and 2 of a three day treatment and jumped out with baseball bats on Day 3. I think it rather gets to the stage where you have to trust the medics, but also listen to yourself - your body knows what it needs, rather better than the medics do!! If you’re not happy with a treatment, consider stopping it and discuss with your MS Nurse or Consultant at the earliest opportunity.
I’ve just answered a somewhat similar post on this forum. One of the things I’ve suggested to that poster is that she has a look at the MS Trusts free publications on Shop - MS Trust They have in particular a publication on DMDs that was published in November 2015 so is relatively up to date. There are many other fact sheets available on there, so have a look through and see which ones might be useful to you both.
