How do you tell a relapse from normal MS stuff??

New diagnosis and before diagnosis
1

Hi,

I am struggling to understand relapses, and the more I read/ask the less I understand!

My daughter has had one on-going symptom - total exhaustion - since she had what was called ADEM but wasn’t, 4 years ago, and since her MS diagnosis in the summer. Over the last month she’s been developing new though minor symptoms - the feel of water dropping on her legs, wobbly legs, tremor in her hands and legs, twitches, and today her legs felt heavy so she felt as though she couldn’t lift them. She also has a prob with word-finding - but that could be an effect of fatigue, maybe. None of these symptoms trouble her too much - apart from being a reminder that she has MS (I’ve asked Qs here about her before, as she is absolutely petrified of the whole MS thing and refuses to look up anything on the web… she tells me her symptoms, then wants me to find out the answers for her!)

She had a cold a few weeks ago, so all this might be a pseudo relapse. BUT - if it is a real relapse (as they are new symptoms) what do we do about asking for DMDs??

From what I read, some pple seem eligible from the time they are diagnosed, while according to the Decisions website, they have to wait for 2 true relapses. My feeling is that if DMDs could help stave off MS then perhaps we should investigate them… and then we’d have to weigh up the risk of side effects vs the risks of MS. Arrrggghhhh! This is all so complicated! Help!!!

Thank you!

V

2

This earlier ling might be of interest Vicky.

http://www.mssociety.org.uk/forum/new-diagnosis-and-diagnosis/how-distinquish-between-real-flare-and-pseudoflare

3

That was meant to say earlier posting. This link might also be of interest.

http://www.mssociety.org.uk/forum/new-diagnosis-and-diagnosis/paroxsysmal-symptoms

4

This is the kind of thing that an MS nurse can be invaluable for. Do you have the contact details for a nurse? If you do, then please give her/him a ring. If you don’t, then please phone the neuro’s secretary and ask for the contact details so you can call.

It’s very likely that this is a pseudo-relapse, but it could be a sort of grumbling real relapse - either is possible.

As far as DMDs go, the NICE eligibility criteria include the very subjective phrase “clinically significant” so it’s not just two relapses in two years, these relapses have to be “clinically significant”. What that means in practice varies depending on the neuro and the PCT, but generally it means serious / disabling / debilitating. Because the symptoms your daughter is having at the moment are mild, this wouldn’t count towards the criteria, even if it was a proper relapse.

But you should discuss this with her nurse - if the nurse agrees that she would benefit from DMDs, then he/she might be willing to recommend it to the neuro. You never know!

Karen x

5

Thank you very much for those links, and thank you (as always!!) Karen for that interpretation of guidelines. I suppose my feeling is that I wanted a magic bullet to stop MS in its tracks!! Ah well…

6

We know what you mean Vicky - here’s hoping! Teresa xx