Hi all. I haven't been here in a while. I have PA and have been successfully self injecting the last few years. I have to say that I felt on top of the world. My hair grew back, I was no longer anxious, I went from 80 to 115 pounds, no longer felt overheated, was sleeping better ect...I never really knew exactly how sick I really was until I started getting better. If that makes sense.
I am a right leg amputee due to bone tumors. It's been a crazy long battle and in the middle of all this, discovered I had PA. The end of November I had another surgery on my residual limb. Everything went fine. After a few weeks I was able to go off pain meds and was back to being myself. I wasn't allowed to use my prosthetic so I had to use crutches again. I fell backwards and hit my back and tailbone. After a few days I couldn't walk and had to go to the hospital. Turns out I fractured the L1 vertebrae in my back. 2 things have happened because of this.Tests show only mild osteoporosis(so not the cause it broke) but I believe having undiagnosed PA for so long before has weakened my bones. Also, I'm having be on pain meds that I believe have knocked out my b12 supply. I'm still injecting as usual, but I am feeling all the symptoms I had before treatment. Of course at the hospital they did bloodwork and showed anemia and Megoblastic anemia. I'm wondering if anyone has had problems with pain meds diluting their b12 and has had any bone fractures due to PA?
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Wowo23
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I take 800 mcg's of folic acid daily and self inject b12 3 x a week. The only thing that's different are the pain meds. My tongue is swollen, hair falling out, ringing in my ears again, nerve pain, anxiety ect...all the same symptoms I had before b12 treatment. Could it be the pain meds causing these symptoms?
I am not medically trained but, the only thing I can say, which I'm unsure if there is any scientific proof of, but I believe I have read it when I was researching, (can you shed any light fbirder please?
Is I believe my pain medication caused my PA & Macrocytic Anemia etc.
I was on a really high dose of OxyContin for many years. If you have seen "The Pharmacist" on Netflix, that is the same drug I was put on, basically it's Heroin in a pill.
I am now volunteering at drug clinics etc & have met many illicit Heroin addicts, most of which have a B12 deficiency.
How is your sleep? I'm assuming you're on Opiate pain medication? Opiates surpress breathing which is why Heroin addicts die from overdose.
I suffered from Central sleep apnoea which is where your brain doesn't tell you to wake up when you stop breathing. Since coming off all Opiate & all other pain medication, my sleep apnoea has now completely vanished & I feel so much better.
The only thing I take now is Hydroxocobalamin injections every other day & Folic acid 400.
My mental health is 100% better as Opiates also cause mental health problems.
Are you injecting cyanocobalamin? Cyanocobalamin is excreted more rapidly than hydroxocobalamin. Do any of your pain meds affect kidney function? Might be worth looking up side effects and interactions of your pain meds on drugs.com. Might give you a clue.
Martin_12, whilst it is true that cyanocobalamin is, on average removed faster than hydroxocobalamin this isn't always the case and in studies significant numbers of patients actually retained cyano longer than hydroxo.
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