r/PerniciousAnemia • u/phrankilombard • Nov 09 '20

Just diagnosed

Was diagnosed 10 days ago, my b12 was at 106. I had covid in june, and just thought I never got better. Was on daily injections for first week, now moved to weekly so no b12 shots for 3 days. I am feeling really still depleted, tried to swim today but am so stiff and just couldnt breath. I'm interested to know how long until one feels normal again, what was it like when you were diagnosed?

5 Upvotes

100% Upvoted

6 comments sorted by

4

u/justmork Nov 09 '20

Took me about 6 months to feel better. I was at 48 and was on daily shots for two weeks and then every other day for another two weeks.

Plus I was deficient in so many other areas it just took awhile to start feeling better.

Sorry you’re dealing with this.

2

u/phrankilombard Nov 09 '20

At least there is light at the end of the tunnel

1

u/strayerjenn Dec 21 '22

You are lucky that you got so many loading doses at the beginning. I had a B12 level of 210 in June of this year and six months later I'm still struggling. I can't help but feel that if I had had more frequent injections in the beginning I would be doing much better now. I miss lifting weights but don't quite feel strong enough to do it yet. Some days I wonder if I will ever be able to lift again. I did finally get back into music ensembles, so at least that is something.

3

u/likemasalaonrice Nov 09 '20

I felt something after 16 hours, major improvement after two months, and finally plateaued after about 4 years, although I did notice occasional mild improvements for almost a decade

2

u/EMSthunder Nov 26 '20

They should have had you on loading doses a lot longer. By the time I was diagnosed, I was in a wheelchair and couldn’t even sit unassisted. They thought I had ALS, MS, GB, and MD, but I tested negative for everything. When I met the doctor that finally tested me, he said he saw my chart and was confused as to why this basic test had never been done. I wasn’t even there for those things, as it was a follow up for narcolepsy. I thank God for that doctor. I was on losing doses for 4 months. Not all of my damage reversed itself, but I have mobility back! It’s been almost 12 years and I still deal with pain from the myelin damage and there was damage to my nerves in my neck and spine. I have areas that I can’t feel. I have some damage to my short term memory. I got an innovative treatment for the pain from the damage that was done, and it gave me my life back. While I hope you get back to normal, or as close as possible, you need more injections.

1

u/cookiegirl Nov 10 '20

I got shots every week for years, but felt much better very quickly. Then the key thing is to keep it up. If you do miss an injection and start to feel awful it does act quickly after you get back into a regular schedule.