Hi again all… You’ve probably all read about my twitching legs and no sleep thread? No? Well what are you waiting for!! Lol… Anyway… I’m off to see my MS nurse next Monday, following years of not bothering since my Copaxone was stopped. At the time it just seemed like another appointment for nothing in the end. (My Copaxone was stopped because I hadn’t relapsed and they thought it would be better kept until I did - silly old me thought that was what the Copaxone was for!!). She, my MS nurse, has asked about what changes have happened, what I’m feeling that’s different from when treatment stopped, etc, etc… My question is, do you keep a symptom diary? Should I? It would be easy to record changes but sometimes I just take some as being old age (at 44!!) setting in and not knowing what constitutes an MS episode and what doesn’t! I’ve never been one a ‘feel sick - staying in bed’ type of person. I hate taking tablets and will refuse to unless its imperative that I do (I had a total hip replacement last year and forced myself to take the tablets that stopped blood clots following the operation), so recording when I’m ‘ill’ or ‘when something’s different’ would be really hard to do. Has anyone got any suggestions? I don’t want to feel like a hypercondriac (?) because I could easily say ‘right hand not gripping like it was yesterday’ and the like every single day!! HELP! Edan.
i keep a diary of major things - for things like a numb hand that has lasted 6 weeks, blurred vision if for more than 2 or 3 days, fainting, spells of dizziness that last days/weeks, falling banging my head on the garden wall, etc. I dont bother for the little niggles that come and go every day or the fatigue (unless particularly horrific). I mainly do this due to my addled brain which appears to have no memory function these days as i kept going to apts and theyd ask me how id been and like a tool id say ‘yeaaaah fine’, forgetting about episode x and drama y. I find it helps to look back and see how much better I am now than at the beginning too and that symptoms have improved/are less frequent. It also helped my MS nurse & occ therapist nurse spot patterns too. Must admit I have been a it rubbish at iactually doing it the better I feel tho 
Hi Edan,
I don’t keep a symptom diary, for the simple reason that I don’t think encouraging me to focus on my symptoms every day, or every week, or whatever frequency it happens to be, is very healthy or constructive. Ideally, I want to spend as little time as possible focusing on my symptoms, and certainly not laboriously recording them all.
I may be wrong, but I don’t think the medics care exactly what I experienced when. The exception was when I was asked to draw up a timeline of symptom history, as part of my assessment for DMDs. But even that was only done from memory, supplemented by reference to e-mail archives, because when I’d been feeling exceptionally rubbish, or had been bad enough to go to the doctor’s, I had sometimes mentioned it in correspondence. So it was quite interesting to look back, and see that: “Oh yes, that week I told my friend I thought I’d hurt my leg, or that I had flu’”. It was possible to piece together what presumably must have been small relapses.
I’ve never tracked them as a deliberate exercise, though. What records exist are only because I just happened to tell someone - which obviously tends to be when it got bad enough to be newsworthy.
I do trust that I can remember in broad terms (i.e. enough for the neuros) what happened when. If something’s either serious or frequent, I’m confident I’ll remember. If it’s either not serious, or it’s rare, I’m not sure I need to remember. If it hasn’t happened for a year, I’m probably not too concerned if my neuro doesn’t know about it. And if it’s so small it’s not even on my list of top half-a-dozen problems, I’m probably not worried he doesn’t know, either.
In the time typically allocated to appointments, I think even “Top Six” is a bit ambitious. I think, if I’m lucky, I might get to discuss “Top Three”, which are usually self-selecting, as it’s not hard to work out what your biggest problems have been, since last visit.
Tina
Hiya Edan
Yup. Being from an admin and problem solving background - Ha this MS is a toughy, though! I have documented my symptoms over the past ten years in diaries with a write up list one or twice a year.
When I took them in to my new MS nurse she was impressed as she never known anyone to do that. My first neuro said “I like people to self manage.” So I did for 8 years! At least I got a pat on the head for this MS thingy. LOL!
Marty
Hi Edan,
I keep a symptom diary and include any medical appointments and what was said, any change of dosage etc. In December I saw a neuro, ms nurse, physio and orthotics so good to list them all.
It’s easy to forget when things changed, no harm in it and good to look back at good year!
I also have a post it note in my diary that I write new symptoms, quesetions down to take to MS nurse. Also I might forget things to tell/ask her.
My MS nurse now expects me to produce a list - she types it into the computer. If I was you I would take one.
Hope it goes well,
Jen
Hi Edan
Two comments, from two successive Neuros:
1 - If any new symptoms appear, or an old one gets much worse, AND, if it lasts for more than 24 hours, make a note.
If it lasts for more than a week - get on the phone.
2 - Before an appointment, make a list. Put the thing that is giving you most trouble at the top (and so on down to the least problem at the bottom. Talk through the list (like, don’t hand it over, but a copy could be handy if asked for).
And from me - I don’t know where you were a MoDplod, but if it was in the South, there is a fair chance that you have seen my pass (in the past).
Geoff
Thanks for all your replies. All points have been noted. Geoff - As all newbies do, i moved around quite a lot in the early days. I worked with all three services, RN at Portsmouth, Army at St. Georges and Dalton barracks in Oxfordshire and I finished up at RAF Halton, just outside of Aylesbury, Bucks. As an ex-matelot myself it pains me to say that the Navy were the worst ever to work with. Halton was very exciting - all the new flyboys to convert to the military way of thinking!!
Hi Edan
Then our paths have not crossed.
DRA Farnborough, and Shrivenham as staff. Portsdown E, and W, Malvern, Chertsey (all DRA or DERA) and Warminster, Upavon, Bovington, Main Building, and Portsmouth as a visitor.
When I add in the interesting places abroad, I suddenly realise that I did get around a bit in the last twenty years.
Geoff