neuropathy source

[Lhood08]

hi all,

Does anyone else on here have Sjögren’s as well as PA? I am experiencing constant tingling and occasional burning/numbness in my fingers and toes. (specific fingers and toes, not all)….It got worse when I did a reloading series of dosages of B12. I’m curious - does neuropathy usually flow from PA or Sjögren’s? Or perhaps it doesn’t even matter.

[Narwhal10]

Hi Lhood08,

I do not have Sjorgen’s and PA, I have Raynaud’s phenomenon, PA and whatever else. Trying to work out which is causing constant tingling and occasional burning/numbness in your fingers and toes can be problematic.

Although, the clue is it got worse when you had ‘reloading series of dosages of B12’. I must admit on reading that I found it rather an anomaly. Usually, we determine our own frequency of treatment in accordance to our individual symptoms. If a person requires daily injections then that is what they need, if another warrants once every fortnight that is their requirements.

Obviously, when people relapse then the body demands more. Triggers for this can include fighting infections or viruses, life events such as a house move where it is all systems go.

See how you fair with your own regime. Your body will give you clues, hints and answers.

Cofion cynnes.

[Lhood08 in reply to Narwhal10]

What is the anomaly? That I had reloading doses? My primary care gave me a series of loading doses and then injections 1x/month. Neuropathy continued over the next few months so my hematologist recommended trying loading doses again to see if it would fix anything. Then back to 1x/month unless I could find a different that works. So far my only pattern is that neuropathy got worse with the two loading doses 😓

[Jillymo in reply to Lhood08]

I have both PA and Sjogrens together with other autoimmune conditions. It is difficult to know what is doing what but I also suffer the neuropathy hands and feet. I remember my symptoms geting worse before better but now get days where I have hardly any symptoms at all. I do get set backs if I exert my self, get a viral infection or a flare up of one of my other conditions. It is a case of worse before better.

[Narwhal10 in reply to Lhood08]

So, yes, having reloading doses is the anomaly. Although, when I read, ‘when I did a reloading series of dosages of B12’ as you had administered injections not your doctor.

Now, it becomes even more apparent. Gosh, do not leave it to your doctor or as you are in the States it is very likely that your insurance dictates your treatment. This is because the medical profession have not been taught properly about the disease.

Some one very recently on another website who is a doctor has stated how they were programmed at medical school. They were not allowed to be inquisitive, ask questions, think differently. As FlipperTD said doctors will want to retest your blood.

Please learn about this illness, join the PA Society and download Dr Chandy’s book.

b12d.org/book

You see there’s no money in PA/B12D. Someone recently wrote on here about the illness being a political issue. Of course it is too. It really would be lovely if somebody would raise $100m plus (£77m) in 36 hours for us.

Pwb lwc.

[Lhood08 in reply to Narwhal10]

Thanks, I appreciate that. I did notice that everyone on here seems to inject more frequently and that’s been confusing in discussion with my doctors.

[FlipperTD]

Hi Lhood8.

As you've already learned, Auto-immune conditions rarely arrive in ones; they tend to hunt in packs. Don't give in; keep at it, but it may be worth keeping in touch with your doctor and making sure they appreciate how you are. Don't fall for the multiple, repeat blood tests for B12. They're pointless once you're on replacement therapy, and can confuse.

Good luck!

[MrsTuft]

How did you get diagnosed with Sjogrens out of interest?

[Lhood08 in reply to MrsTuft]

Early sjogrens bloodwork panel + symptoms. My doctor was willing to diagnose without the lip biopsy and despite being seronegative for the actual SSA/SSB bloodwork.

[MrsTuft in reply to Lhood08]

I have all the symptoms. My neurologist thinks I have it. I just saw an awful rheumatologist this week who said what’s the point of diagnosing it as no cure and you just manage it with eye drops etc at my own expense. But then said she’s lip biopsy me which I don’t fancy. 🤷‍♀️

[Lhood08 in reply to MrsTuft]

Oh dear! Sounds like a bad rheumy. Mine prescribed hydroxychloroquine because some studies show it can systemically help prevent further disease. Worth looking into ❤️

[MrsTuft in reply to Lhood08]

She was vile. I still feel annoyed. x

[Regenallotment]

I don’t have a formal diagnosis of PA or Sjogrens but have many of the symptoms , I do have hashimoto’s. I have been self injecting B12 Weds and Sat for some time and recently took a 2 week holiday and decided to stop and see how it went. (The old am I a hypochondriac mind game) by day 5 my little and ring fingers were numb. My whole arms fizzed and tingled on walks. Restless lower legs in bed. I have had all the nerve endings tested previously by neurology and nothing there. I will be back to my routine of SI B12 that solves this.

[Lhood08 in reply to Regenallotment]

Wow so interesting, thanks for sharing your experience!!!