How do you know when ur having a relapse?

I have rrms about 7 years…I cannot pinpoint any relapses although increased tremors in hands…can only use 1 finger on left hand…no fine motor skills in my riht hand and very little in my left hand…coukdnt drive for 3 years with doubke vision…use a stick to walk…can walk about 109 netres shakily…bladder problems…on meds for bkadder…poor balance and coordination …speech slurred…starting ti thibk i have ppms not rrms although consultant keeping me on capaxone…what do others think??

Hi Rose,I think that you like every one of us have your own version of MS.The Medics need to write stuff down to justify their more than ample wages.The drug companies need these boundaries to sell stuff which may help people in various stages of their MS career, as defined by wot the medics say.Maybe as different drugs are developed the boundaries invented by the medics are becoming blurred.The Global MS drug sales are worth £6-£8 BILLION annually,and 'praps any subtle changes have passed me by.

Copaxone is usually given to those known as Secondary Progressive,and in my experience after 11 years of the game, if you are secondary,you stay secondary.'Praps the goal posts have been moved to help the flow of money,and availability of drugs for those fortunate enough to be allowed to have them.

Who am I to ever have fraudulent thoughts,but 109m is obviously a huge achievement for you,but in certain places on paper, those reading it may not understand the effort and guts required to do it,and there is a sliding scale of financial reward.

Rose,I think you need to ask your Neuroligist these questions,if you have an Audience with him/she/it any time soon,or MS Nurse if they are not yet extinct where you live.These are my thoughts and views but doubtless you will get others,then you’ll have to work through them all.

Wishing you a peaceful and healthier New Year,

Wb x

Wb

@wobblyboy

copaxone is for rrms not spms

unless my cognitive symptoms have got considerably worse

Hi Rose,

If your vision deteriorated to the extent you couldn’t drive, but later recovered enough for you to take it up again, this still points to RRMS to me.

As I understand it, such recovery would be unlikely with PPMS, as the deficits are permanent.

A high proportion of RRMSers do eventually go on to Secondary Progressive, which might possibly be what has happened. However, some recovery in the past, even if it was incomplete, suggests you did have RRMS at first. RRMS can’t change to PPMS, only to SPMS.

So I’d guess the two possibilities are either that you had RRMS, and still do, or that it’s become SPMS.

A common misconception is that RRMS means you get better completely, in between relapses. But the reality is that lots of people are left with enduring impairment, to a greater or lesser degree. The criterion is only that you do improve, compared to how you were - not necessarily that you regain full function.

Tina

Thank u for replies…I am hoping still rrms and havent moved onto srms…feel much better today but waking still crap!!

Thank u for replies…I am hoping still rrms and havent moved onto srms…feel much better today but waking still crap!!

Carole ,you should have a chat with Dr Wilson at Walton Neuro in Liverpool who decreed I had been bumped up from RRMS to SPMS .He based his decision on events which he described as relapses,and the time intervals between them.I was put on Copaxone after a blast of Mitoxantrone and IV 'roids

Regional variances …Again. Walton do have customers living anywhere between Lancaster and Holyhead.That’s an awful lot of people to mis-prescribe drugs to.

Wb

sorry wb i googled it and found out youre right

No worries Carole,but there do appear to be lots of regional differences in diagnostic criteria and application of drug treatments.I thought that this was one area that NICE was supposed to edeal with.

Wb

I have never been told I am anything other than RRMS, yet I am in my third year on Copaxone…do any neuro’s sing from the same hym sheet.

H

xx