New neurologist - and he gets it!!! But Still suffering roller coaster during recovery :-(

[HopetoB12better]

I was diagnosed in May 2020 with b12 deficiency after months of agony. My regular doctor blew me off for 6 months and I ended up at the Cleveland Clinic neurology and was diagnosed in one visit. This was great news. I had injections 7 days in a row and then once a week for a month and then once a month indefinitely. After about 2 week past my first monthly injection, my symptoms started to return and my Neuro was leaving the practice so I got a new Neuro and he explained that the “flare ups” were part of the long term recovery and that as long as I am trending up overall (like symptoms can come and go but I should slowly improve overall), he said that was normal but I asked him if I can inject twice a month for a few months (as needed) and he was fine with it! My recent blood tests were good - b12 is normal and MMA is low and that means that the injections are working and he said the symptoms can come and go but if it made me feel better to inject every two weeks he was fine with it. I am beyond grateful for him. But I am now

Seeing that this is a long road to recovery because even though my levels are good, I’m still having bad muscle pain in my legs - thighs are the worst, and pins and needles in my hands and feet and cheek and scalp, and the bad thing is that my walking and balance are the worst they’ve ever been! He wants me to continue with physical therapy and said it should help with my feet and legs and balance. I feel like I’m walking with Donald Duck shoes on - like my feet feel too big and floppy and I know I’m walking weird but what else is there to do?? He also checked b6 and a few other things to make sure those were ok cuz I guess they can mimic b12 deficiency and all were normal so I guess this is the best I can be for now. Ugh.

[auntieb]

When you're done with your doctor, could you send him over here please? Guessing you're in the US?

Just for the record, I totally agree about the flare-ups in between injections. When taking every 3 months, I would have around 6 weeks where I was OK, 3 or 4 weeks OK but going downhill and the last couple of weeks where I really struggled to function. But I have noticed the same pattern on fortnightly injections, and even weekly injections. I would never take them any less than weekly. But as a diabetic who has to inject insulin twice daily, I reckon that's more than enough needles for me lol

[fbirder]

Yes, most people show a rapid decrease in some symptoms when treatment starts. Others can take much longer, especially neurological symptoms. Some may never go completely.

[Nackapan]

Thats good you got a neurologist who is on side .

It was the third neurologist I saw said similar and condoned 2 weekly b12 injections. He also said no quick fix. After so many confusing theories and no conclusions and some utter rubbish like saying I was addicted to b12.fr8m other medics.

I'm further 'down the road' .

My waking is much improved.

I couldnt actually walk ar the start.

Roller coaster yes but 3 steps forward and 2 back is still moving forward.

I hope you feel a bit more reassured progress can be made.

T C

[Twaddletop in reply to Nackapan]

I used to work in Glasgow city centre. I had left the building one lunchtime not realising how evident my walking difficulties had become. Several colleagues had watched me try to return to the office. By that time I was actually using my brain to tell me feet to move, you know, right foot move, your turn now left foot. It was their concern that made me visit my GP who also seemed quite concerned. I had many tests including a Schillings test after my GP received my blood results. I’ll never forget the relief of those first few B12 injections. I had totally refused to own up to how poorly I had become. How GP’s are now trying to convince us these jabs are not required just fries my brain. X

[MoKayD]

You description of walking like Donald Duck made me think of when my walking was impacted by B12 deficiency. I felt like I was walking like Woody from the movie Toy Story. My feet felt too big and floppy and my legs were loose and wobbly. After almost 2 years of treatment my legs and feet (except for my still partially numb toes) are normal again. Hang in there, things will get better.

[Cherylclaire Forum Support]

Keep flipping your best foot forward !

You might barely notice your own improvements, and might have disheartening days in the doldrums, but keep on.

In time, others will comment on your improvement - one of the reasons why telephone appointments with any old GP don't work. Continuity, someone who has seen you at your worst , someone who knows to watch you walk down the corridor. someone who believes what you are saying. Mutual trust is hard-won and irreplaceable.

An ENT specialist told me years ago that I was doing absolutely the right thing (by self-injecting every other day) but that it would take a long time; not to give up and be persistent. He also recognised classic B12 deficiency symptoms by looking at my tongue, throat, mouth without feeling the need to repeat pointless blood tests.

I was injecting every other day for over 2 years before I felt that I'd improved enough to try every three days instead - most of these improvements were in the final 6 months of this time. I still don't know for sure whether I have done the right thing or not (why change a winning formula ?) and difficult to tell if lifestyle adjustments have played a part too.

Forever thankful to the ENT consultant though for keeping me on track.

Don't give up.

[HopetoB12better in reply to Cherylclaire]

Every other day for 2 years?? Wow that seems like a lot but if it helps the symptoms I totally get it! I am just desperate to feel that I am getting better even if slowly. I keep wracking my brain trying to think of how I got such an awful thing. Like what did I do so wrong?? Ugh. But I am super thankful for my Neuro! 🙌🏻

[Cherylclaire Forum Support in reply to HopetoB12better]

It does seem like a lot even to me. But for me, it was the only way I knew of to stop getting worse. Then eventually slowly better.

I knew this because I felt like I was dying when on 1 injection every 3 months - I thought they must have got something wrong, missed something as I was getting so much worse. I didn't really see any improvement from this situation until my GP put me on 2 injections a week reloading because my MMA was raised and functional B12 deficiency diagnosed. The previous initial loading injections had done nothing and in fact I never felt any of the injections at all for the first year. Others kept saying how much they hurt, but I had to ask the nurse "Have you done it yet ?"

But that's just me and that was just 2016.

[HopetoB12better]

I also initially took lots of b12 sublinguals At the beginning of my injection treatment and then I stopped cuz I wondered if they were helping, but now that I think about it, my symptoms started to return shortly after I stopped those. I’m going to start back up again - it can’t hurt!!

[Cherylclaire Forum Support in reply to HopetoB12better]

I've only ever used the Boost spray earlier (as a supplement to NHS injections) - which made no difference at all to me.