Forum

Keeping a Symptom Diary

What is the most useful way to lay out a symptom diary? I’ve been keeping one now for a year, just straightforward entries with the date and what I’ve been experiencing. It isn’t an exhaustive list by any means as I’ve not always had the chance to write in it straight away and have often forgotten to. I was advised to take a much abbreviated version with me to my recent GP appointment. I could have photocopied it but didn’t…though I will next time as he kept hold of it. How much detail is useful to go into? I could spend ages writing down every little twitch. On the other hand, I could be missing something important. What it does help with is the emotional side of things. Its reassuring to look back and realise that no, I wasn’t imagining things and oh! this keeps reoccurring. Do you keep a symptom diary? Any tips?

Hello, I keep a diary, especially pre-diagnosis, it was very handy to see any patterns or persisting symptoms. What I use is an A5 daily diary, day to a page. I use the bottom section of the page to list my most bothersome symptoms. Hope that helps. Sam x

With regards to the symptom diary I would keep it brief as in have your top 5/10 symptoms and their dates written down at the top of the page and then have your smaller symptoms and dates further down the page with clear seperation between the two. That way they can focus on the big things, the things that caused you most problems. I would definitely photo copy this one and keep a copy for yourself and let your gp have a copy so that they can keep it on file. I’m not sure if you’ve been referred for any tests or to see a consultant but he question to pose to the gp if you haven’t is what is the next step. Good luck x

Sam - thanks for your reply. I’ve started underlining the main things as I tend to write things out in a torrent! Karina - I’ve just seen a GP again after a year of keeping a diary, suggested by another GP. I have appointments for a blood test on Friday and a follow up GP appointment two weeks after that. I mentioned wanting to see a neurologist but he laid out quite clearly that first he wanted to rule things out, for instance maybe seeing an ear nose and throat specialist in regards to the dizziness. At least I feel like I’m being taken seriously and that things are happening.

I’m glad that you are finally getting somewhere. It might be useful for you to ask what blood tests they are doing and ask if they can test your vitamin level - this is a useful test to have. If they refer you to an ENT specialist when you get the letter with the date of the appointment it has a number on it to call - I would call them a couple of times a week to see if they have any cancellations. I’ve been referred to an ENT specialist and was given a date for November - after phoning a few times I now have an appointment for 2 weeks time so definitely worth phoning to check cancellations. Keep us posted and good luck with it all x

They are testing me for Coeliac disease, full blood count, B12 and folate, calcium, and a whole bunch of abbreviations that I don’t understand: CRP, FSH, LH,TSH,FER,LFT,RGLU,UE; ESR. Shrug. Do you keep notes or ask for copies to keep with your symptom diary? I’d like to trust the NHS to keep everything in order and I don’t wish to become completely obsessive about things…

Fsh= follicle stimulating hormone (ovaries), lh=lutanising hormone (female hormones for ovulation), tsh= thyroid, fer= ?? ferritin (iron), lft=liver function, ue=tests salts etc kidney function, esr and crp both check inflammation one is more immediate and short acting rise when seen than the other. RGLU I have no idea sorry Arwen

Thanks Arwen! I think the last one is something to do with Gluten.

I think the rglu is to test glucose levels. I asked for copies - I have copies of everything that I’ve had done as well so all my blood tests and MRI scan etc i have copies of - which turned out in my case to be extremely useful as have been under numerous different consultants for numerous different things.

Advice I had from my first Neuro was to note any new symptoms.
If they lasted for more than seven days, to get on the phone.

So the logic is that you know where you are right now.You put down anything new and note if it continues. If it continues for more that a week it could indicate a relapse (a lot of Neuros use the seven day duration as a sort-of test) so you get on to the neurology dept that cares for you.

Another Neuro said to make a list starting with the thing that gave the most problems, and work down to the most trivial. Never just hand over the list, but it should help you to remember what matters. If an appointment goes over time (dead easy with a GP) then you know that the most important stuff has been mentioned.

Geoff

Karina and Geoff - thanks for the advice. Does it cost to get copies of medical notes? The seven day rule is a useful one to remember. What about those odd little tingling/pricking/shooting etc. sensations - does it count as new if you start feeling them somewhere you’ve never felt them before?

I managed to get copies of all my blood test results without paying - I just asked the doctors receptionist to print them off for me. I paid for one MRI scan copy which was about £20 but managed to get all the others for free. Because you haven’t been diagnosed yet the rule of thumb with regards to relapses is that a relapse is counted when symptoms start 30 days after the relapse/symptoms. So technically if you had new symptoms but were within 30 days of a previous one it would be classed as one episode. Hope that makes sense