Resources for symptom tracking - Pernicious Anaemi...

Pernicious Anaemia Society

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Resources for symptom tracking

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So many in this community recommend symptom tracking....and I'm finally getting around to doing it! I've been using the Symple app, so I wanted to share this resource:

sympleapp.com/

I had to purchase the premium version, which allows you to enter custom symptoms. So far it's pretty easy to use, and I like having it available on my phone where I can quickly record a symptom as it arises.

I'm curious if anyone else has a tracking format that they'd like to share? Or has tried the Symple app?

I'm still trying to determine if my symptoms are from B12, or I have other neurological issues going on as well. I have had many classic symptoms including paresthesia, but also have a weakness/burning muscles that comes and goes in my right arm and leg. My labs, MRI and EMG have all been normal.

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Nackapan profile image
Nackapan

Thank you for that

Ive not used any apps to share

I'm going to have a go . As you say any 'tools' may help

Hampton77 profile image
Hampton77

My exact symptoms as well and all test came back normal...?I will say I had b6 toxicity as my first prognoses but went on to discover PA actually megablastic Anemia both b12 and folate and EPI....I sound like I was an unhealthy person but I have always been a very healthy fit person Was told by a Mayo Clinic neurologist it is some hereditary DNA

in reply to Hampton77

I also was diagnosed at Mayo as well! When did you get your diagnosis? Mine was early September. Have you found improvement since you started injections? In regards to B12, the only thing I tested positive for were paritial cells and low serum levels. They did not test MMA or homocystine...I was immediatly put on injections. I was also diagnosed with SIBO and Ehlers-Danlos Syndrom (hEDS). My gastrointologist said that we have to assume that I have PA, and that I should be on injections for life. I did not like the neurologist that I saw at Mayo. He didn't believe that my problems were caused by B12 (contrary to my Mayo gastrointologist) because he believed that I should have been responding better injections once a month. In fact, he suggested that I stop injections altogether! He also could not find another cause or explination for my neuro symptoms. I have found some improvements since I switched to weekly injections, but I've recently gone through a "relapse" of symptoms after I tried to go back to twice monthly injections.

I'd like to hear more about your experience in the neurology clinic and Mayo in general. Sorry to hear about your other health struggles as well! Did your neuro symptoms include weakness on one side of the body?

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