Dear all, I wondered if anyone was willing t share any experiences or wise words with me. I was diagnosed with MS in February following two separate episodes in the space of seven months. Since my diagosis I ave been fortunate enough not to have another relapse, just exacerbation of symptoms when I have been unwell or stressed about exams or family life (or how to combine exams and family life!) However, I don’t feel “right”. I am constantly exhausted, to the point of almost falling asleep each afternoon and I feel like my cognitive function is rapidly declining - I often can’t think of the right word, can’t concentrate and struggle to “multi task” as I used to. So I was wondering if this sounded familiar to anyone? I am wary, since diagnosis, of seeing everything as part of the MS but I also know that I feel verydifferently physically and mentally to how I did 18 months ago. Any wise words would be gratefully received. Thanks, Sam
Hi Clemette,
Although some people do recover completely between relapses, I personally have never felt completely well again, and I suspect we’re in the majority.
I think relapse and remission can be quite confusing terminology, because people (including MSers themselves) can take this to mean there should be no problems at all when not actively relapsing.
In reality, remission doesn’t mean very much more than: “Not as bad as you were”. It could refer to a full recovery, but could also refer to a partial recovery, that still leaves you pretty ropey.
I think you’re right to guess it’s probably the MS. It’s a myth that everyone’s absolutely fine between relapses. They do leave some residual damage, and you’re still ill, whether you’re relapsing or not.
Tina
Thank you so much for your reply. I have to admit that, until recently, I have pretty much been in denial that the MS could affect me all of the time but I think I am going to have to accept it.
How do you manage the fatugue symptoms day to day?
Hello Sam.
Welcome to my world.
I too was diagnosed in Feb and the brain farts as my teenagers call them drive me insane.
I find my ability to plan aswell as multi task has gone,but I still think I can so endless jobs get started but then forgotten.
You will learn to live with the new you but it does take time.My last big relapse left me with residual problems for the first time,so it was a shock to not recover to the usual me.
Post its become a godsend,a huge calendar,and the mantra to all the family of if its not on the calendar it wont happen.
I also now put an egg timer on if I’m cooking and carry it in my pocket as the number of times I’ve forgotten stuff is on is dangerous.
Have you started on DMD ?
tAKE CARE
Pip
Hi Pip, no DMD - my inital relapses were “mild” according to my neurologist and so he doesnt think I need them yet.
This is what I find confusing - if I only have early-stage, “mild” disease (albeit it with quite a lot of white matter changes) why do I feel so rough all the time??
I think its just the nature of the beast I’m afraid…and the neuros know alot about the medical side of things but diddly squat about what its like living with it.
Have you read the download stuff on the society site about managing fatigue, if not that might be worth a look at.It would help to show the family what you mean about fatigue rather than just being tired aswell.
If you are in pain,have tight muscles/spasms etc it may help to discuss meds for them with the gp as dealing with these symptoms and trying to carry on as normal will also drag you down unneccessarily. Your gp can give any of these meds he doesnt need neuro approval.
Are you keeping a diary of symptoms and length of time they last? If not I would suggest you start now so that when you next see your neuro you have specific info to hand not vague (cant think of the word!!!) begins with a R memory related!!!
See what I mean about brain farts…but can you fill in the blanks?
Are you sure you havent got a rumbling uti as that may be making you feel off aswel?
Pip
Hi again Clemette,
I’m so sorry, I have no tips about the fatigue. 
My neuro doesn’t even accept it’s caused by the MS, and instead blames my Baclofen, and wants me to cut down.
The GP checked my notes, and it shows I was complaining of fatigue well before I ever started Baclofen, so I’m sure it’s not that.
Although I have a confirmed diagnosis, the neuro doesn’t seem to think any of my symptoms are ever caused by MS. If I’m fatigued, it must be the drugs, and if I have joint and muscle pain, it’s “unrelated”, according to him. I find it a bit of a waste of time going, because apparently, there’s not much wrong with me, and what IS wrong cannot be attributed to MS.
He’s quite kind in other ways, but he doesn’t really listen. Unless something’s absolutely blatantly neurological, he doesn’t accept it’s related. So tingly fingers (the least of my problems), yes, but aching back, aching feet, fatigue etc. - no, it’s all probably something else.
Tina
I think your experience will ring true for many of us, me included. After diagnosis, I don’t think I was ever really guns-blazing, all-systems-go me again, at work or at home. Not for long stretches, anyway. I’m still capable of the odd burst of real energy now and again, but not in a sustained or reliable way, alas.
I have found modafinil to be a help with the mental fatigue, and I would hate to be without it, but it just takes the edge off the mental dullness. It doesn’t cure it.
Alison
x
Thanks again everyone. Alison, do you mind me asking how “bad” things were before you started the modafinil. It looks interesting but I wondered how my GP would respond to me suggesting it, given that I am still able to work full-time?