B12 could it be something else/France/injections

[lunez22]

Just a follow up post and info for anyone

This forum was so helpful for me when I was suffering and very lost so here goes

I started experiencing pins and needles in my feet, then to hands and even in face, tip of nose etc. then followed patches of numbness in my ankles and wrists, fasculations everywhere from calves to torso. had low range b12 and low out of range folic acid. Moved to France where b12 protocol is very progressive. was on injections 3x a week. in the meanwhile saw a neurologist who showed peroneal nerve damage in both legs and nerve damage that manifested as carpal tunnel. as I work in Monaco the doctors there started Ivig quickly as the b12 did not seem to be helping and symptoms were getting worse (I was walking with a cane, very trembly) , the first treatment really helped. the 2nd also, but the 3rd not as much. with no diagnosis in site. I was referred to another neuro and more tests. I started feeling better about 1 year and 6 months after first symptoms. I finally saw a neurologist (this was my 4th) who finally told me that I was having something similar to cisp (chronic inflammatory sensory polyneuropathy) she was categorizing this as an inflammatory neuritis not currently active. no more ivig manage symptoms with gabapentin or lyrica.

in short what I've learned

1. trust your intuition. I knew I felt like crap, and doctors where just trying to give me antidepressants at first!! only you really know your body

2. I'm not sure the role b12 played I still take supplements... but I don't think it was the whole story

3. the stress of illness/anxiety will definitely make your symptoms worse, try as much as you can to calm your mind (I know easier said than done) I always did mild yoga (I could not go to classes so signed up for an online service yogaglo with tons of classes/levels), some meditation, and had a group of close friends/family i shared illness with

4. sleep was key I noticed a HUGE difference when I slept well

5. France is a great place to get b12, it was pretty easy to see a doctor and just say I needed it, she wrote a prescription, I even had a nurse come to my house to inject! if you need to stock up you can get b12 over the counter about 2 euros for 6 ampoules

I hope this helps if I have a relapse I will not wait so long this time to see someone. Neuro stressed timing can be essential in stopping nerve damage that could be permanent

THANK YOU everyone

[pvanderaa]

Glad to hear you are getting on well. I’m in Paris later this year for meetings so will try to get to a pharmacy and buy OTC. What type cyano?

[lunez22 in reply to pvanderaa]

I remember they do sell two forms, one is just diluted further but same potency. Remember to ask for "Buvable".

[Happysmile]

I tried to buy OTC in France but they only sold cyanocobalamin not hydroxocobalamin. I would be interested to know which you were able to buy

[lunez22 in reply to Happysmile]

I've only ever gotten Cyano, but never tried to get something else.