Recurring B12 symptoms

[HBerry]

About three weeks ago my doctor decided to switch from my weekly injection to monthly. I made it about 10 days before I could start to feel the symptoms returning. The main symptoms being exhaustion, dizziness, trouble catching my breath and numbness, weakness and tingling in my legs. I went to see my doctor and we started again with weekly injections. I have since had 2 weekly injections. I haven’t seen much relief like I did last time my doctor tried to switch me to monthly injections. I started to feel much better last time by my second injection.

Yesterday I started to feel really bad, my back started hurting too so I went to the ER. I had to use a cane to move. They ran tests (bloodwork, urine and chest X-ray) and found nothing. I am still hoping that B12 injections are the cure for what’s ailing me. It seemed to give me some relief in the past.

I did have another run of tests from my doctor 2 weeks ago:

Homocysteine: 9.3 (5.1-13.9)

MMA-Methylmalonic Acid: 145 (0-378)

Folic Acid: greater than 20 (2-20)

B12: Greater than 2000 (232-1245)

I have a Neurologist appointment Wednesday and another appointment with a Gastroenterologist to have a colonoscopy and an endoscopy in a couple weeks.

I am concerned that there might be more to this than just B12 deficiency although no one seems to be able to give me a diagnosis. Because my doctor switched me from my weekly injection I was sure that was the cause of my returning symptoms but that may have been just a coincidence and there might be more to all of this. Does anyone have any insight on this? Questions for my upcoming appointments?

[Nackapan]

Sounds awful. By changing your regime it seems the doctor has managed to make you ill! Seems too much of a coincidence. Hopefully you will get back to at least where you were before. I hope your appointment goes okay. What I don't understand is why the regime was changed. What reason was given. Also why 2 weekly now. The doctor seems to have really messed with you.

[HBerry in reply to Nackapan]

I didn’t word that properly. It’s still once a week injections not 2 weekly. I have had 2 injections since the 10 day. So it’s been 2 weeks since my weekly injections were altered. The reason that she wanted to switch to once a month was that my levels are high, now over 2000. She doesn’t really understand B12 deficiency. I am going to inform the Neurologist of this and see if I can increase my injections to twice a week. Hopefully he will allow this. I’m also going to start the process of investigating other potential diagnoses. Have you done this? I was planning to do this anyway but was hoping that B12 injections would reverse all my symptoms. I was moving in the right direction so I am hoping for more improvement.

[Nackapan in reply to HBerry]

I'm on 2 Weekly injections at present. Tried weekly first some time but decreased them ad no further improvement at that time. I recently had an extra one after a week to see. I've had a brain mri and cT end of last year. They were okay thank goodness . Tiny bleeds apparrently that can be normak for my age.

Seen 3 neurologists. One thought post concussion syndrome involved as well as neurological symptoms with b12 defiency. The other thought anxiety! Virtigo and b12. The last one thought I'm left with chronic tension headaches ongoing . All bloods are being done regularly.

I've had a shift recently. Less dibilitating migrain/ tension headaches but utter fatigue/exhaustion woth tinnitis head pain rather than headache and balance a bit off again???

I'm nothinking on any medication at present

Hoping brain recalibration? Trying to think a positive phase

I able to do much at all agsin virtually housebound. Feels like I've been thrown against a wall a few times.

So in answer I'm trying to go with the flow. Really don't know what's happened to me .

The neurologist especially have stated nothing sinister seen on scans.

So 10 months in.

I would try not to have your b12 tested as if your doctor doesn't get it the high leveks will be used to reduce your injections agsin. The bnf guidelines are very clear. Once on injections testing not required. Go by symptoms.

Btw I was well and on no medication before b12 defiency diagnosed after a virtigo (first ever) happened. Did have a bad fall proor to this. Like you I'm puzzled why a clear diagnosis not possible. Many theories but seemingly b13 injections the only thing that's helped me so far apart from pain killers.

I hope your appointment goes well.

I asked if anything else needed testing and they said no.

[deniseinmilden]

See brilliant replies by Sleepybunny, Foggyme and Wedgwood. Go to her profile by double clicking on her name and looking under the heading "replies".

Sorry I must go to work now.

Good luck with getting your jabs reinstated or learning to SI.

[deniseinmilden in reply to deniseinmilden]

Sleepybunny

[deniseinmilden in reply to deniseinmilden]

Foggyme