PA flare ups?

[pslmt]

HI! Does anyone know if like other auto immune diseases, PA can have "flare ups" even while taking b12 injections regularly? I seem to have neurological symptoms flare ups every now and than.

[Nackapan]

I imagine so. It will only take to get an unrelated illness. A virus stress ect. When your body is dealing with something else as well you will get poorly. Your body is already working hard disk anything extra I think could cause a flare up.

Just my thoughts

[Gambit62 Administrator]

As PA basically destroys the mechanism that allows you to absorb B12, and the symptoms of B12 are the symptoms of the B12 deficiency that results I don't think it would cause flare ups in the way that something like hashimotos would.

Not sure how regular the injections you receive are - looks like you self treat - so assume you go on symptoms in terms of deciding frequency. More likely that there is something else going on - though it may be related.

What neurological symptoms are you talking about - I seem to be forever managing to trap nerves ...

[pslmt in reply to Gambit62]

Thanks for your reply! I was injecting once a week regularly for about 2 years. The medical community all seem to say once a month. I tried to lengthen my time to every 10 days. I'm trying to determine if the increase in time, getting off my schedule could have something to do with this. I think I will return to weekly and see what happens. The symptoms that seem to come up every so often are paresthesia in feet/lower legs and my quadriceps are achy and burning. Normally, the parethesia can hardly be noticeable and quads not at all. I would say it has happened a handful of times over the last few months. Before being diagnosed, These were among other symptoms. Its frustrating.

[deniseinmilden in reply to pslmt]

I suggest you forget what other people say and listen to your body instead - it knows your personal situation much better than anyone else!

Lots of people have self injected daily for decades to good effect so do worry about it - if you need it, you need it!

Symptoms are your body's way of telling you that it needs fixing. Do what suits you to keep you as symptom free as possible - that way you know you will be helping your body as much as possible.

[Gambit62 Administrator in reply to pslmt]

listen to your symptoms and use those to determine frequency - if moving from weekly to 10 days has caused symptoms to return then I would go back to weekly

[Jaw1 in reply to Gambit62]

I've been 'trapping' nerves a lot lately as well but wasn't sure if it was related to B12 deficiency. I've had pain and tingling in my feet/legs for about a year and only started on B12 four weeks ago. Have been wondering if it is now affecting my larger nerves as well.

[Gambit62 Administrator in reply to Jaw1]

Jaw1 - would suggest that you start a new thread on trapped nerves.

4 weeks in to treatment is actually very early and it really isn't that uncommon for the aches and pains to get worse before they get better. The process that re-cycles neuro-transmitters responds very quickly to B12 - the process that heals any damage to myelin sheath around nerve cells takes a lot longer to heal.

Trapped nerves result in quite sharp pains generally associated with movement and although B12 deficiency will make you more sensitive it wouldn't directly cause a nerve to be trapped, as this is an anatomical interaction.

[pvanderaa]

Autoimmune symptoms are different from neurological symptoms. The repair of neurological damage can actually seem to make the symptoms get worse as the stronger signals on the nerves are misinterpreted by the brain.

Keep a logbook of symptoms and reset to day zero at each injection. The worsening symptoms within three or four days after the jab could be from repair of neurological damage and may actually be illusions and therefore “good” indications that nerve repair is occurring.

It is very hard to convince your brain that these are illusions. The logbook is a tool that can help your recognize your specific sequence of symptoms that recur after each jab.

I would say the autoimmune symptoms are more related to the deficiency.

Flare ups of similar symptoms can also be caused by gluten and dairy. Keep track of food in your logbook as well, as there is a 3 to 72 hour delay from ingesting to the appearance of the flare up symptom(s). Again, they follow a sequence of symptoms.

[Alfabeta in reply to pvanderaa]

I find your advice excellent you are such a boon to this site as your experience and advice is so practical and rational.

I get symptoms soon after my injections, they last for about a week then cease until near my next injection although, over the last 3/4 cycles my mid term symptoms have ceased altogether- this may be because of the new NICE recommendations which enabled me to demand 8 rather than 12 weekly injections.

Good health!

[pvanderaa in reply to Alfabeta]

Do the deficiency symptoms return before the 8 weeks between injections is finished?

I found that the severity of the symptoms that appear after the injection is proportional to how low my B12 got before the injection.

I was able to convince my UK GP to put me on monthly hydroxo injections as well as my USA GP to put me on weekly cyano injections by using the evidence in the logbook.

Are you keeping the logbook and tracking the symptoms after the injection daily? Do you find a pattern or sequence of symptoms that is the same after each jab?

Are you able to convince yourself that these “after jab” symptoms, although very similar to symptoms before the jab, are from repair of nerve damage?

[Alfabeta in reply to pvanderaa]

I was diagnosed 4 years ago. On 12 week injections symptoms returned between weeks 6 to 8 and sometimes just before or just after my injection. Since going to 8 weeks the symptoms have returned almost immediately after. The type and severity of symptoms have reduced dramatically over the 4 years. It’s been a lonely journey as PA seems to be well understood but I have damage to the myelin sheath something which my doctor appears to know nothing about

[deniseinmilden]

Oh yes! Definitely! It seems to be one of the things that defines all autoimmune conditions. Git isn't it?

If you're good make the most of it and if you're down, console yourself that it's going to get better again before too long!

If people ask when I'm having a tough spell I just say "I'm looking forward to being better again"!

[pslmt]

Thanks you all for the information. This is a good forum as physicians really don't understand in my experience. Its seems that the b12 keeps symptoms "at bay" but underlying symptoms don't really go away. As Alfabeta says, I believe my myelin sheath has also been damaged. But if that's the case, how would the b12 have an effect if the damage is there? interesting.