I know there are people in this society who were marathon runners or participated in sports before being diagnosed with PA. Have any of you, perhaps people younger than myself, recovered enough to continue with your sports?
I am 60 years old and was diagnosed with PA in 2017 following a couple of years of increasing symptoms. I had a course of loading injections and since then I have been able to eliminate the symptoms with sublingual B12 and folate. I started running in my forties and before 2017 had been running 2 miles almost every day. The furthest I had run at once was 7 miles but I had quite a bit of stamina and was able to walk for hours or do quite heavy physical work. Since being diagnosed with PA I have never recovered this stamina. I have to alternate running and walking and need to rest more often when doing heavy work. (This became even worse after I had Covid in early 2020.) I am curious about other people's experiences because the limited medical info. on PA informs me that with B12 treatment I should have made a full recovery.
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akanari
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Yes I used to run but had to stop due to wear and tear on my knees and since then I’ve cycled, often long distances.
I’m 62 and was diagnosed with PA 8 or 9 years ago and I was lucky as I was diagnosed fairly early on.
Initially I was offered an injection every 2 months but no loading doses. I found that I was good for a few weeks and then fatigue and brain fog would creep in.
I carried on cycling but early on was struggling and one day set off for a 75 mile ride but at the meeting point 8 miles into the ride I was so overcome with exhaustion I had to turn round and barely managed to get home. I spent the rest of the day in bed and it shocked me!
My GP was supportive and offered monthly injections which helped but I was good for a week or 2 and then it was downhill until the next injection.
By that point I’d cut back on cycling and other activities, including my social life.
I decided to self inject and started on weekly but fairly quickly moved onto twice weekly, which is what I’m still doing.
I’d say it took me about 2 years in all from diagnosis to being able to feel I could start building up my fitness again. I started slowly and was sensible as too much at once definitely led to 2 steps backwards.
That’s all a few years ago now and I’m pleased to say that I’m as fit as I’ve ever been for cycling, also helped by having more time as I’m now retired.
On a good week I cycle over 200 miles with a few individual rides of up to 200km if there’s an event.
My advice would be to find the injection frequency that allows you to live your life on an even keel, with no highs and lows of energy etc. When you’re feeling healthy start exercising cautiously and be prepared to start from scratch and build up slowly. It might take some time, a year or 2, but I’d hope you will get where you want to be.
Thank you Jan!!! That is so amazing and encouraging to hear! I hope I have been reasonably well with sublinguals but based on your experience I might try injections again to see if that improves my energy levels. And I will continue to try to build my stamina. I think your message will give great encouragement to athletes out there who have been recently diagnosed!!!
Thank you Nackapan! I'm going to give the injections a try. Covid confused the issue because I had the long version that also causes fatigue. But even before Covid my stamina was impaired. Maybe the injections will help.
Hi Jan. I find your reply very interesting. I too feel very fit. But after long walks ( 6 miles) I often feel the need to nap. This never used to happen. Are you the same?
Hi I am 61 years old and up to 2015 I was regularly cranking out 60 mile bike rides until one day I woke up and could hardly walk! Like night and day, all the horrendous symptoms kicked in tinnitus, limb numbness, terrible brain fog, unrelieved exhaustion ,visual issues, digestive problems. No joy with NHS - after doing research and joining B12d.org I got my diagnosis in 2017. Self injection brought me back up to speed within 6 months. I used sublinguals and stretched out my injections to 4-6 weeks intervals. Unfortunately I increased the time period too much (4 injections in 10 months) and 4 weeks ago I crashed again. So back to loading phase again - I think we have to face the fact that we are never "cured" just in abeyance as long as we take the injections. Good luck.
Hallo, I am playing tennis on court from 1970. Now I am 63 years old man. But in 2016-2017 I was walking with a stick, because was diagnosed with peripheral neuropathy because of great lack of B12-50 pg/ml. Till now i have more than 900 injections with B12. Now i have 2 shots a week and sublingual between. Now i am playing tennis with 60-65 percent recovery. You have to be patient !! Believe in yourself ! Good luck !
I self inject every 2 weeks but find that after mild exertion it takes me about 2 days to recover. I’m sick to death of my husband saying I need to improve my fitness when all I can manage is 15 minutes on the treadmill. After reading these replies I’ll try upping my injections to once a week and see if it helps. Fingers crossed!
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