[MAT52]

During a bout of pneumonia 3 weeks ago my pain almost entirely disappeared. Now I'm getting better it's flaring madly. No visible swelling - just acute nerve pain in feet and right up legs to top of thighs - same with hands up to shoulders. Does this sound like RA or immune mediated neuropathy?

Seeing GP (UK) on Wednesday and meant to be starting Imuran once chest is properly clear. Anyone else get nerve and joint pain as a combination? How do you distinguish if so? Are these part of the whole and has anyone found relief from suppressing the immune system? Ive tried Amitriplyline, Gaberpentin and Cymbalta plus Methotrexate and Plaquenil - nothing has yet agreed with me - severe reactions to all but Cymbalta.

Dry eyes and dizziness especially dominant just now with the pain. Pain is like inner nettle rash with funny bone pain. I'm no longer sure RA is the right diagnosis for me. :confused - ive posted this on the autoimmune disease forum too because the intense pain and uncertainty are really getting to me and want to know as much as I can.

[en bloc]

You know, this may be way off base, but your strange cessation of neuropathy pain while sick with infection has me curious.

Just trying to think logically here. In immune mediated neuropathy, the best course of treatment involves suppression...thus reducing antibody production and activity.

I wonder if your cessation of neuropathy symptoms has to do with your immune system being focused on the infection, not attacking your nerves. When you get an infection, your immune system ramps up and becomes very active...so in that sense, you'd think the neuropathy would be worse, but for you it did the opposite. So I wonder if the infection redirected the antibody activity, for lack of a better description...does this make sense?

If possible, then I think this entire experience with the infection and cessation of SFN might actually indicate more probability that it's immune mediated.

But like I said at the start...I could be out to lunch here and completely off my rocker. I was just thinking out loud...and outside the box.

[MAT52]

Originally Posted by en bloc

You know, this may be way off base, but your strange cessation of neuropathy pain while sick with infection has me curious.

Just trying to think logically here. In immune mediated neuropathy, the best course of treatment involves suppression...thus reducing antibody production and activity.

I wonder if your cessation of neuropathy symptoms has to do with your immune system being focused on the infection, not attacking your nerves. When you get an infection, your immune system ramps up and becomes very active...so in that sense, you'd think the neuropathy would be worse, but for you it did the opposite. So I wonder if the infection redirected the antibody activity, for lack of a better description...does this make sense?

If possible, then I think this entire experience with the infection and cessation of SFN might actually indicate more probability that it's immune mediated.

But like I said at the start...I could be out to lunch here and completely off my rocker. I was just thinking out loud...and outside the box.

Thanks so much - EnBloc this is exactly the direction my own thoughts are running in. Surely - even though this isn't the most obvious way these things go - it does show that there's some connection with automminuty? My instincts have always said that this SFN is directly connected with my RA - possibly also my Hashimoto's. My rheumy seemed to think this was likely too which is why I'm to try Imuran.

Unfortunately I had my skin biopsy done twelve days ago when the neuropathic pain had more or less disappeared so not sure if his pin prick tests (looking for the numbest part of both legs - we chose outer calves) were as meaningful as they might have been if the usual pain had been present. Nothing is really that numb with me - more icy cold, tingly, aching and burning simultaneously. It's reached right up as far as my groin now that it's back. This is very much creeping me out. GP will just suggest that I take another symptomatic treatment - can't recall what the next one is called. He won't be keen for me to try another immune suppressant when I'm so drug intolerent and have been so ill all winter. But the consultant thought it worth me trying - said it made sense to him so I guess his word takes precedence. I just hope I can tolerate it and it works to stall the SFN. Mat

[en bloc]

Your skin biopsy won't be affected by these wax/waning symptoms. The nerve fiber density won't change that fast. So your results should be accurate and give a clear picture of the condition of the fibers and density.

You'd need to ask an immunologist if my theory has any merit...they would know. I just don't think it was a coincidence with the timing of the pneumonia and cessation of symptoms.

[MAT52]

Originally Posted by en bloc

Your skin biopsy won't be affected by these wax/waning symptoms. The nerve fiber density won't change that fast. So your results should be accurate and give a clear picture of the condition of the fibers and density.

You'd need to ask an immunologist if my theory has any merit...they would know. I just don't think it was a coincidence with the timing of the pneumonia and cessation of symptoms.

Thanks EnBloc - that is reassuring about the skin biopsy although I was wondering whether the initial pin price test may have been less accurate than when I have lots of pain.

It would be good to see an immunologist but my antibodies have only been equivocal/ normal to date. And I'm unlikely to be referred to one anyway. I emailed my gp about the worsening/ progression of nerve pain so he can think about it before my apt with him tomorrow as I only get ten minutes. Mat

[Neuroproblem]

I heard of infections causing Autoimmune disease, i never heard of it completely alleviating, Was it a viral or bacterial?
The only thing i heard is that infestation with certain parasites, can alleviate allergies and autoimmune diseases(the medical community hasn't accepted it).
I think its more of your bodies immune system exhausted itself by fighting the pneumonia than actually redirecting the autoimmunity. Think about this way, in an Autoimmune disorder, anti-bodies are directed against specific parts of your body, these dont go away, because you will also have those tissues that the antibodies can attack. i think your immune system is exhausted from producing antibodies, so there is less in your body to damage your tissue. The exact opposite can happen as well.

[MAT52]

Originally Posted by Neuroproblem

I heard of infections causing Autoimmune disease, i never heard of it completely alleviating, Was it a viral or bacterial?
The only thing i heard is that infestation with certain parasites, can alleviate allergies and autoimmune diseases(the medical community hasn't accepted it).
I think its more of your bodies immune system exhausted itself by fighting the pneumonia than actually redirecting the autoimmunity. Think about this way, in an Autoimmune disorder, anti-bodies are directed against specific parts of your body, these dont go away, because you will also have those tissues that the antibodies can attack. i think your immune system is exhausted from producing antibodies, so there is less in your body to damage your tissue. The exact opposite can happen as well.

That's an interesting hypothesis Neuroproblem. My GP has emailed me back wondering if the infection has exacerbated everything causing an intensification of acute sensory neuropathy. Is this what you are suggesting as well? Does this have anything to do with autoimnunity if so? In answer to your question viral or bacterial - it started out as viral but I suspect it turned bacterial when it went onto my left lung.

[Neuroproblem]

Originally Posted by MAT52

That's an interesting hypothesis Neuroproblem. My GP has emailed me back wondering if the infection has exacerbated everything causing an intensification of acute sensory neuropathy. Is this what you are suggesting as well? Does this have anything to do with autoimnunity if so? In answer to your question viral or bacterial - it started out as viral but I suspect it turned bacterial when it went onto my left lung.

yes i have heard viruses and bacteria causing autoimmune. Such campylobactor can cause guillan barre,(pn and weakness, parylsis), pandas syndrome(strep throat), but these are rare though.Since your body is fighting an infection, the immune system requires alot of energy to fight it, and it uses up your fat, glucose protein. so your immune system basically exhaust itself. Parasitic infections are a different matter, parasites have to deal with your immune system when they infest you, smaller ones (microscopic) are treating like a regular infeciton. larger parasite like worms, and such have to suppress your immune system, so they can live inside you, so your autoimmune and allergies may go away. Though there are contrary to this, some worms can make your allergies, worst, i think this works with only specific parasites though.
Have you heard of the hygeine hypothesis, being in constant contact with microbes(bacteria,fungi,virus) at a young age protects you from autoimmune disease,cancer later in life. The western world suffers far more of these diseases than countries with poor sanitation,why? at a young age when your body is still developing immune system, it needs to be in contact in with certain microbes that are harmful and not harmful, so it can distinguish between them later in life. in a western world, young children are indoctrinated to believe a sterile environment is a clean and healthy environment, as a result more people get eczema, psoriasis, or immune related disorders.
an episode of monster inside me, showed where these people suffering from severe allergies, or autoimmune was completely relieved when they infested themselves with parasites. doctors do not approve of this, because theres no telling what parasites my do in the long run.

[MAT52]

Originally Posted by Neuroproblem

yes i have heard viruses and bacteria causing autoimmune. Such campylobactor can cause guillan barre,(pn and weakness, parylsis), pandas syndrome(strep throat), but these are rare though.Since your body is fighting an infection, the immune system requires alot of energy to fight it, and it uses up your fat, glucose protein. so your immune system basically exhaust itself. Parasitic infections are a different matter, parasites have to deal with your immune system when they infest you, smaller ones (microscopic) are treating like a regular infeciton. larger parasite like worms, and such have to suppress your immune system, so they can live inside you, so your autoimmune and allergies may go away. Though there are contrary to this, some worms can make your allergies, worst, i think this works with only specific parasites though.
Have you heard of the hygeine hypothesis, being in constant contact with microbes(bacteria,fungi,virus) at a young age protects you from autoimmune disease,cancer later in life. The western world suffers far more of these diseases than countries with poor sanitation,why? at a young age when your body is still developing immune system, it needs to be in contact in with certain microbes that are harmful and not harmful, so it can distinguish between them later in life. in a western world, young children are indoctrinated to believe a sterile environment is a clean and healthy environment, as a result more people get eczema, psoriasis, or immune related disorders.
an episode of monster inside me, showed where these people suffering from severe allergies, or autoimmune was completely relieved when they infested themselves with parasites. doctors do not approve of this, because theres no telling what parasites my do in the long run.

This does make a lot of sense. My late mum was never overly keen on good hygene when we were kids for precisely this reason and my sisters don't have any autoimmunity. However when I was a baby I was starved to the point where I almost died - my mum didn't realise that breast feeding was a supply and demand thing and ran out of milk without knowing this. So I had to be fed on liquid rice to try and bulk me out and I'm fairly sure it was this rather than being overly clean, which sent my immune system into orbit re fight or flight.

The GP says he thinks that there's a new strain of Influenza A going round locally and suggests mine may well have been this. He agrees that my body was probably too busy trying to fight this virus and then got exhausted so this is perhaps why it's gone into overdrive now and the neuropathy is so bad. He agrees it probably is part of my RA/ multisystem autoimmunity and thinks the fainting and dizziness are part of it - exacerbated by the flu. I didn't suggest that I might actually have a type of Vasculitis - as I do believe - because he thinks I'm too knowing already!