[Jeeves]

Hi All. Pleased to meet you. Was wondering for some observations/comment. It'd be appreciated. Neuro issues started 20 years again with what was termed Benign Fasciculations (thank God it wasn't ALS). No big deal if rather uncomfortable. 3/4 years ago I realised that I had some motor symptom issues and was dxed with PD. I'm doing okay generally with the disease although it was naturally something of a blow being dxed with a young family to raise. Oh well...……..
So I've been tootling along, doing my thing but have been dogged with peripheral neuropathy recently. Again, like the BFS it was more of a nuisance than anything but the crash came about 2 months ago when my thumb went numb and has been painful to the touch. This takes things onto a new level and is a concern. My neuro believes that sensory impairment is part and parcel of PD but very few of my PD friends can claim to have neuropathy. I reviewed the landscape and realised that I've been on Omeprazole for years and that lack of b12 due to this must be the culprit. So I went to my GP but she told me that my last two blood tests showed B12 levels at 350 (200 being the lowest threshold I believe). Irrespective, I have bought B12 lozenges and ingest them sublingually. No benefits yet as far as I can see. I bought some ALA and BOY does this stuff cause gastric distress. The capsules I bought were 600mg as this is the dosage I heard could repair nerves but there's not a cat in hell's chance that I could digest these as far as I can see. I can manage 200 daily currently and may try to titrate up but we'll see. Advice on taking this stomach wrenching stuff would be appreciated as well as any more general observations. All blood work is - according to my neuro - normal (ain't it always?!).


Thanks in advance to any contributors. Best.

[DishRag]

Be careful with the over the counter vitamin/supplement self treatment. I caused myself a couple of grand in Dr visits and lab work. The 'coctail' I was taking caused heart arrhythmia, so I have dialed it all back to just (2) B12 supplements that I alternate each day.

Unlike many here, I only have PN. For you and others that have other diagnosed illnesses I think it really complicates things. PN alone is elusive enough that almost all neurologist just shrug when it comes to treatment. PN has many masks and go from a transitory state, then seemingly mutate into a whole new symptom overnight.

Anyway, sorry to be a Debbie Downer, but you have your work cut out for you.

[Jeeves]

I'm beginning to realise that! Strange cause I'm as fit as a fiddle in many respects. What a crappy mystery the body is eh?

[glenntaj]

--IS too low, despite the common lab ranges.

In Japan and many parts of Europe, the lower level of the ranges tends to be around 500-550, and some even have symptoms of deficiency at those levels. Optimum levels are likely considerably higher. A lot of us who do B12 supplementation like to keep our levels around four digits.

Moreover, the cobalamin molecule (B12) is the largest molecule the human body regularly uses for nutritive purposes, and one of the easiest to interfere with the absorption of, so if you are supplementing make sure to take it alone, at least two hours after eating or one hour before. And, using an activated form, such as the already methylated methylcobalamin, rather then the cyanocobalamin often found on store shelves, is a good idea, in case you have any metabolic pathway problems (activated forms have to go through fewer conversions to be usable, and you don't really want your body having to regularly get rid of cyanide radicals anyway).

Now as far as the ALA--yes, many people do report stomach upset; it is, of course, acidic. You may want to try R-ALA, which is made up of only the right-handed ALA molecules, which are the ones active in the body anyway (regular ALA tends to be of mixed type, and these are not all bioavailable). The upside to this is that one can take far less for a similar effect--most people say the the dosage ration of R-ALA to regular ALA is somewhere in the 6:1 to 10:1 range, meaning that with smaller doses, acidic side effects can be minimized.