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Managed to steal some internet briefly, need some advice please

Will look at answers as and when i manage to steal some more internet or when ours is back fully, but just needed some opinions. I've been trying to do a symptom tracker, last thursday to this thursday for a week so im more prepared come doctor time. But I'm very confused, I have managed to narrow them down to 14 different areas, though i don't know correct terminology. i'm noticing that i seem to get loads of different ones all in one day, is this normal? Also, what do you guys class as a symptom of note? i.e, does it have to go on for a length of time to be classed as one? i'm doing a tally chart for them at the mo, and doing a line every time i experience one the once, then if it carrys on throughout the day, leaving it as the one line. Because my symptoms seem to be random and not very consistent its very confusing! Yesterday, I went from shaky legs, to what i think is called spasticity? (i could feel the muscles tightening), then pain. Think what im trying to ask is, do you guys have a recommended way of tracking symptoms that isn't confusing? i think I've totally lost myself! Also a little nervous, as whole left leg was numb for a few hours last Wed and started to have trouble moving my toes.. I've never been a real toe wiggler, but it seems to be hard to move them, well anything much really, first thing in the morning, is that normal?

thanks guys, hope to be able to steal some internet again and be back soon!

 

n.b. not actually stealing internet, my dad has kindly reconnected the phone for a little bit

I think you might be overcomplicating things a bit - it all sounds horribly confusing! (E.g. how do you differentiate between one line for something that happened once, but briefly, and something that happened once, but all day?)

And if it's confusing to you, it's going to be worse for the neuro! 

Most neuros will mentally exit as soon as they see a long list of symptoms or something very detailed so perhaps you should step back a bit and just go with an overall "how was I today?" score for your categories rather than keeping a tally? (If you're going to keep a full diary like this, make sure to summarise it before you see the neuro.)

Actually, if your symptoms are that random, perhaps you should just tell the neuro that, i.e. "Since X/X/XX, I seem to have random symptoms on and off every day. The ones that trouble me most are......, but I also get....... They seem to be worse when......" and leave it at that?

It's hard to know what's for the best, but I would think that it's really important for you to be confident in describing your main problems to the neuro, but not to go into too much detail because you probably just won't have the time.

Karen x

Yes I definitely see the confusion. As Rizzo said if you don't keep things concise the neuro will switch off which you definitely don't want. My symptoms vary too but I've written things like this to keep it concise.

15/10/2011: 1st episode of parasthesia on L (face/leg/arms) with intermittent episodes of swallowing/bladder/ urinary problems. Parasthesia cleared by Dec.

10/02/12: parasthesia On L as above after getting flu. With buzzing sensation on R side of head. Symptoms cleared in 1week with flu.

08/04/12: Sensation of corset round chest on L (in a band) with difficulty taking deep breath and L parastheisa again. Symptoms cleared 1-2 weeks later.

I then have the top 3 symptoms which are currently bothering me with a note of whether it's mild/mod/severe.

I tend to make note of the major changes like this though it did take me a while to try and understand what really was something different and a major change in comparison to just my 'normal' variableness.

Good luck

Reemz

X

 

 

 

thanks for the tips,  i wasn't gonna show the tally list, i was just using it to try and work out the main symptoms over a week, hopefully narrowing down 14 to 5. sorry typed that message in a hurry before the router was turned off, sorry if it did not make sense. I haven't even got a neuro app. this is just for when I get my first app. with new GP which im still waiting on confirmation of registration. I know its bound to be a month or so before I can even see my new GP, but I want to be properly prepared which is why im starting now. so maybe saying random symptoms on and off since X date, then  if i can figure out the top 3 current ones tell them those? Or should it be top 3 over the course of when i started having trouble? I'm not trying to over complicate things, I'm just trying to understand things myself I think and making a mess of it!

Hi Jules,

I agree with Karen and Reemz - it'd be better if your notes are more concise and to the point. For example: when you first noticed the random symptoms and what those symptoms were / are. Keep your more persistent, troublesome or ongoing symptoms at the top of your list. Note whether you've noticed if anything in particular affects your symptoms - for example if the heat or the cold makes any difference.  

If it's helpful for you to keep a daily or weekly diary then there's no reason why you shouldn't carry on doing so, but time is fairly limited for appointments so you need to get as much out of it as possible.

The neuro will ask you questions too so some of the things that you want to discuss may well be covered throughout the conversation. It's easy to forget things when you're in there so if you make a brief list to give to the neuro then it will go in your file.

Hope that helps

Debbie xx

 

 

thanks for the tips, as i say i was never gonna give them a long list, was just using it to narrow things down, i seem to have narrowed it down to 5 main ones over the week, but i don't have a clue about all this terminology, parasethis??? spasticity??? yikes! is there somewhere on this site that explains all that stuff?

I understand how you are confusing yourself.. I too am waiting for an appointment and it is all so confusing. What to write, what headings to put  it under. I have come up with about main headings.. Eyes, Arms and Legs, Back, Cognitive and Random.

Im doing a daily diary too and intend to write it all up into the headings.  I dont want to confuse the neuro, but I do know that my GP wont be giving him a complete list of things that are happening with me, as my GP doesnt write it all down. I go and speak to him about the various things going on, and then he condenses it onto his screen as numbness and pain. Over simplified I think!

Good luck sorting it all out x

Thanks Paula, at least you have a GP taking you seriously, i don't know how long i should wait before going to ask if i am actually registered or not, cos of course i need to let my old GP know out of courtesy. Good luck with your app.! I have as 5 main ones over the last 6 days : Pain (of different kinds), Numbness, Sensory (which i think covers invisible fleas, running water and prickly hedgehogs), Tremor and Cognitive. Does that sound good to you? Your list sounds good!

x

It is all so confusing. My GP said yes its highly likely you have got MS. No info. No support. Just a referral to a Neuro. I dont know till tomo when appointment with Neuro will be, hoping its soon tho as I cant see properly, cant get comfortable, got awful shaking right arm, numb right leg, numb patches on my face, neck, arms, hands and legs, and my lower back seems to get electric shocks every few hours. 

I think you should phone the new drs asap to see if you are now registered. And yes, your list is good; sensory is a good one so I will add that to my list :D. Its all so difficult to know what to write down, and what to leave out. The list would be endless if I was going talk about the past couple of years! Good luck x

Got my confirmation letter today, both relieved and scared at the same time! First gotta phone my old docs. to tell them i have left out of courtesy. Am trying to think of a polite reason to give them!

x

Hope you get some joy with the new docs xx

 

Thankyou :-) Hope your neuro appointment goes well. *hugs*

xx

Hey Jules - was thinking - is there someone who can go with you to back you up?? My hubby was a godsend when I went xxjenxxx