What do you track?

[cjtmn]

I am wondering what symptoms I should track and share with my neuro. I don't want to be someone who tracks every twitch and tingle, and I am really new to all of this (no Dx, still testing).

How do you decide what is noteworthy and what is just everyday oddities?

Thanks for your input.

[cjtmn]

Thank you JJ and Karry for your replies. This is very helpful! I realize I am hyper-sensitive right now to everything that seems abnormal and know that docs dont' have time (nor is it helpful) to hear everything that has ever happened to me. I suspect the clinical findings are more important than my symptoms at this junction anyways.

I will track it all for my own benefit (and in case someone asks for it), but get it down to a top 5 or less list for the next time I see/talk to the doc.

cjtmn

[karryon55]

Exactly as JJ has written is great.

When I first went to my Neuro I had my symptoms typed in bullet points with concise information. I handed one to the Neuro with the other for my reference. The first thing he asked of me was to circle the 5 symptoms that I find are the most difficult to live with.

I had been asked by my PCP to also compile a timeline of symptoms going back to 15 years prior & give my Neuro this as well. I took weeks thinking of all the stuff that had happened over the years & I asked family if they recalled anything. My PCP checked this before I took it to my Neuro so she could advise me on what the Neuro would find relevant or not. My PCP also had some things to add to the list that I hadn't even thought about. It was then time to type it over & over until I had the shortest version but also with all the appropriate details. It was a fiddle but well worth it. My Neuro even said thank you for spending the time with this as he could refer to it easily.

I now only ever take a list of troublesome symptoms that are new or existing ones that have gotten worse. I but the duration, frequency, severity & anything else like "heat" that might make it worse. I also limit my questions to just a few & put them in order of importance to me so if time runs out the remainder can go onto next visits list.

After all of what I've drivelled on with here lol the most important thing to remember is that they are pretty busy & will not look at lengthy lists rather just toss them aside. If they're short & to the point they "may" look at them. The Neuro examination is probably one of the most important things you want them to spend time on and if you spend too long on your history the exam will be shortened...that's a guarentee.

Good luck.

Karry.

[supermum_ms]

Good question!

I think the best idea others have mentioned for similar Q's, is to limit the list to YOUR top 5 issues eg

1: dx Optic Neuritis June 2013, April 2014, Nov 2014
2: dx unilateral foot drop - after frequently tripping and second heavy fall this year
3: Unexplained pins and needles, numb patch on left thigh
4: loose bladder control - hot weather, exercise class  
5: Fatigue - daily, early evening, worse in hot weather or after a bath

Every body is unique, the point of seeing a neurologist is for them to work out if something is actually neurologically abnormal and then name the neurological condition, so don't try to over think things, just list the sx's that are most concerning to 'you' and if it's vague eg fatigue, only provide a very brief example because too much information can be more confusing than helpful. If you 'search this community' you'll find some other example lists, that you might find helpful too....

Cheers.........JJ