I'm new to this web site and I'm very grateful that I found the PA society.
I've been living with PA for a little over 18 months. I give myself injections every 2 weeks. Once a month wasn't cutting it fir me. My B12 is in the 700 range but I'm still having many issues. The muscle twitching is driving me crazy. I still get heaviness in my legs and balance problems time to time. I have memory issues and brain fog once in awhile also. I'm just really concerned and overwhelmed right now. I have been getting treated at the Cleveland clinic and my neurologist just released me and said I more than likely have permanent nerve damage.
Does anyone still have the same symptoms that I'm going through?
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Mpvivo
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They have a few members in US and a recent PAS news letter mentioned a PAS support group starting in Chicago area. They are always willing to hear from people who want to start new groups.
The article above uses the term B12 deficiency anaemia (spelt anemia in US) but I'd point out that many with B12 deficiency do not have anaemia. See links about Misconceptions in this reply.
I was definitely diagnosed with PA. Tested for MS and Myeloma and was cleared.My hematologist at the Cleveland Clinic is monitoring me every 3 months. I am also taking iron pills along with vitamin D pills and folic acid pills. My thyroid test all came back in normal range.
I'm in Indiana. Have same symptoms. I look at like if all diseases, this one is very manageable. I take lozenges (methylcobalamin) under the tongue between shots. You will assimilate this better. Also take magnesium powder for legs twitching & heaviness. Dr Gilliams.
If you are giving yourself B12 injections every two weeks, I am surprised that your B12 serum level is still only 700 (ug/L or pmol/L ?) I would have expected it to be at least double that. If there are neurological symptoms present, then in the UK, the medical guidance is that you have every other day (EOD) injections until no further improvements can be had (not until doctor thinks you've had enough, or nurses are getting fed up with jabbing you !)
The sad truth is that this rarely seems to happen. Nerve damage can take a long time to repair. If you have nerve damage, you would want to continue repair work until absolutely certain that nothing else can be gained by EOD injections. Being told that it is "more than likely" permanent is not helpful.
So why not try ? It would be useful, but not essential, to have a supportive doctor who can monitor results of a trial. If only to ensure that one more medical professional has seen with their own eyes that frequent B12 injections can make more difference, long after they would have called a halt to them !
Thanks for responding. I guess I should have been more clear. I was seeing the neurologist to rule out MS. I do see my hematologist every 3 months. I'm going to reach out to her and see if I can give myself more frequent shots.
Good idea. I wish you the best of luck. It can take a long time to see recogniseable progress. Hard to keep going sometimes when nothing appears to be happening...... but it will, hopefully and eventually, so the sooner you start the better.
Hello, I'm in UT. I do daily injections. It's the only thing that worked. What was your b12 level before the injections? I don't test the b12 anymore as when you inject, it goes to your blood stream which means the test will always be skewed/high and inaccurate. That tests what is in your blood stream not what you absorb. Get needles and b12 from Canada: canadadrugsuperstore.com/
They only have cyanocobalomine, but it has worked for me. I tried both hydroxo and cyano and stuck with the cyano. I have never tried methyl.
Also watch this: youtube.com/watch?v=m3DopqT...
I went to that guys web site and bought his B1 dosing guide, it's well written and based on the research of the original docs that figured all this out.
B1 got me past the brain fog and helped with energy level but it is tricky to do high doses. I'm on keto so I already do all the b1 high dose protocol of high sodium, potassium and magnesium intake; thus I never had any problems dosing b1.
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