Silly questions but, I have noticed a lot of people mentioning keeping track of symptoms and on other pages also keeping track of blood tests results on . Has anyone got templates or similar to do this, I am not very good with tech and am driving myself crazy losing bits of paper and information, need to get organised in easy to understand spreadsheets or similar?
Any ideas , suggestions much appreciated
Me too x
So it's not just me then 🤭
I got a journal I found on Amazon called 'WTF is wrong with me?' It has a template for each day to track symptoms, food, medication, weather, sleep, stress level, exercise and more and space for keeping note of appointments and contacts.
ooh I'll have a look Thanks
Not a silly question but an important one. I've found the best way of keeping track of B12 injection frequency and co-factor supplementation (Folate/Iron etc) is with a simple diary. I Use an A4 sheet of paper and fold it in half, (A5) draw lines in columns on each page and enter the data in rows and keep track by date. Entering symptoms/notes etc in each column. I'm a tech wizzard but found this old-school method more reliable and also liberating because I don't need to switch on the computer/mobile. I started off using an Excel spreadsheet and made my own database but ended up writing on the back of envelopes when the brain fog took over!!
Great question, thanks for asking.👍
I need a new brain, or at least to train the one I have paper would be my go to but I put things in safe places, then forget the places 😂👍. My children all know not to ask me to keep things safe , we never see them again. In saying that I am a real luddite when it comes to tech so bit lost really, people say people like me can't focus, when actually it is trying to focus on just half a dozen things instead of everything 🤯🤯🤯
Me too, big standard ruler, paper pen 👍🏻
Apparently paper lasts 100 years, tech stuff 10. 🤷♀️
Hi Polo22,
I’m old fashioned. Always have been always will be. Nothing wrong with a file and print outs of blood results.
I use a diary and when very poorly, practically bed bound, my squiggles was a record of what was happening in my body.
I’m so used to having tick charts at the ‘end of a bed’ kind of approach that I did it for myself. In 2017, I created one for myself, my individual symptoms and based it on what they use in hospitals. I just used Excel, put dates along the top, body parts down the left column, starting from head to toe.
Then, put - if no headache, + if I had tinnitus, if my tinnitus was bad ++, if tinnitus was deafening+++. I took a fortnight’s worth to a GP appointment. So, just 1 sheet. They took me more seriously. This is what I am experiencing day in day out. Got blood tests and pain relief.
I have a whiteboard and magnets so very important pieces of paper are there.
😢
I put notes into my apple phone ‘notes’ each night. Then email it to myself once in a while and print it out.
But it’s important you find what works for you.
🤗🤗🤗
I put the dates I plan to have B12 injections on my google calendar. It is set up as an event that happens every two weeks with no termination date. They say "Time for B12 injection". After I have one, I edit it, change the date if it was not quite when planned, and change that entry so it says just B12 injection.
I use google calendar on my iPhone/iPad also. Easy to make notes, colour code, edit and visual. Eg. I was able to do a quick audit recently to show my symptoms where getting worse and more often as time passed, I started logging symptoms Feb 2021. As I have only just recently been concerned that my problems are linked to B12 deficiency, this was very convenient, easy to do because it was very visual. After an initial doctors obstinacy I have found a doctor at my surgery willing to listen and take action.
In BC, we have system called LifeLabs that allows us electronic access to all our our lab test results. It can even plot the results for particular tests if you want to see that. Once you start B12 supplementation, you don't need to keep track of B12 levels if you have pernicious anemia. They could be high because of the supplementation. Just keep supplementing, and get shots more often if you have symptoms such as tingly toes.
Hi Polo , I did the good old fashioned keep a hard backed diary. I’ve done this for two years since I started SI. It has worked as I was able to see my improvements too and that really boosted me.
I literally split the day to view A5 sized diary into three parts with hand drawn lines down the page. And hand wrote meds , symptoms marked out of 10 for severity , food intake ( to see if there was any correlation to symptoms. Injection days at top. It was a lot less hassle than doing spreadsheets etc. As for blood test results I hand wrote sheets for that too and staple them together . Sounds laborious but believe me I hate excel and things like that so much easier for me . I don’t feel the need to keep the diary anymore as 16 months on made huge progress. Hope this helps
I had a tracking chart - a table with dates running along the bottom, and about 10 symptoms along the left side - some frequent ones, some highly visible ones, some initial ones, some "most want to get rid of" ones. Useful as all I had to do each day was colour in any that occurred (from diary -as short-term memory was appalling ).
I could fit about two months on an A4 sheet.
My GP told me that it was "..bordering on the obsessive" and I told her "No, this is desperation."
Retrospectively, I think it had much to do with being a teacher who had had to go off on long-term sick leave !
Lol. I made a symptoms timeline chart which was colour coded with peaks and troughs, dates, injections. My GP looked terrified when I showed him and thought I was crazy and more or less ushered me out of his surgery. My haematologist on the other hand was very impressed and asked if he could keep them. Luckily I had a spare prepared colour copy for him in my bag🤣
That chart was the most useful thing to help me understand wtf was wrong with me and get better treatment.
Love a bit of colour-coding !
Cognitive issues mean anything visual is much easier for me to follow.
I always thought those consultants who wanted to study the chart enthusiastically were the ones who might find me an answer ! There were some that I did not even mention the chart to, even though I had it with me. You get to know when to bother, don't you ?
The difference of a word. I am being ‘methodical’. Not obsessive I may be desperate because I am extremely unwell.
It is called a MEWS chart - Maternity Early Warning Score. On General wards, paramedics, Emergency Departments, operating theatres, checking emergency equipment, stocks of drugs, all sorts of charts are used. A female teacher on long term sick.
If you were a male Civil Engineer on long term sick, I wonder how that A4 sheet would have been received by the G.P ?
These days, if teaching, having a colour-coded tracking chart is a must - how else will you be able to prove to Ofsted that all students (and all supporting staff) know where they are, what they've done and what they have yet to do to complete qualifications ?
[- and how else to keep track when they keep giving you more students ?]
So perhaps it is only seen as slightly obsessive to create a chart if you aren't paid ?
Some consultants have thanked me and seen it as a helpful diagnostic aid - but not many !
The Pernicious Anaemia Society has a symptom checklist on its website, some people use that as a starting point to identify which symptoms they have and then rate them on a scale of 1 to 10 in terms of impact on their life and add in their injection dates . Not everyone has the same set of symptoms and some symptoms come and go and others arrive even after many years! You can print off the page and use it weekly, monthly, quarterly whatever suits you.
A shift in symptoms 
Keepon keeping on..
where do you get your b12?
2 months after loading doses
Methylcobalamin photolysis and side effects?
