Hi Mat52
I sent you a PM yesterday - did it get through - if not let me know and I'll resend it.

nope, I'm not in the UK---both of the doctors that prescribed my IVIG were in the Boston, MA (US) area. They both felt felt that IVIG was the safest because it does not suppress the immune system. I got the same speech from both that suppressing the immune system could possibly lead to cancer or other unwanted ailments.
Truthfully......I would have used the immune suppressants in a heart beat if at least one of them told me it would alleviate this neuropathy. They are still not out of the question if it starts progressing. I sometimes even want to try one now to see if suppressing my immune system would help me regain strength/function and feel better.. I know they would not help with the actual healing process of the nerves. But I just wonder because, if my "overactive" immune system caused this in the first place---maybe I would feel better if it was suppressed??? BTW....no 52 is not considered "older aged" (caught that in your earlier question---and I am 51!!! lol)

Never heard of these methylation crisis things Mrs D - is this a mineral or vitamin deficiency of some kind? I did take folic acid while on the drugs you mention yes. I will ask my GP to recheck my foliate, B12 and ferritin levels a well as fasting cortisol on Monday with full blood count.

Very interesting about the art and toxicity - the hospital consultant asked the same thing so I've been researching. The answer is that I did paint messily for many years and I often got paint in my mouth and skin. As my skin was often covered in open eczema sores I have wondered if this could have poisoned me somehow?

But my artist friend who is quite obsessive and used to have to do health and safety checks for aarge scale art and health centre he ran - told me last night that this was very very unlikely as none of the paints I used contained lead or any other toxic chemical. I have used mainly embroidery now for 7 or 8 years because the lifetime of eczema defeated me finally. The eczema went overnight but I suspect this was hormonal because I was perinenopausal at the time and had severe eczema and alopecia as a tiny kid and until I was 45. Ironically I then got RA very badly in my hands for several years so found stitching very hard going.

Other sources of possible poison/ contamination could be my mercury fillings, high levels of radon gas where I live and other environmental factors. I can't afford to replace all my filings with the other kind (which contain synthetic oestrogen and tend to fall our very quickly with me) but was planning to ask the maxillofacial surgeon about this - given one of the doctors said that my symptoms corresponded with some sort of long term poisoning.

Regarding the Radon gas - well our house is for now sale and we are hoping to move away at the end of the summer. I used to get severe rhinitis and the other skin related stuff until we moved here . So when it went away I blamed the intensive farming and pesticides we were surrounded by at the time.

More recently I have decided that my body has always attacked itself since I was little one way or the other. My mum starved me as a baby to the point I was 24 hours off dying (by mistake re inexperience and lack of breast milk) and a professor I saw last year agreed that this could have triggered fight or flight/ autoimmunity. Somehow I've survived each period of crisis - but never has to survive this level of crisis before and I am, as you say, getting older and somewhat less able to withstand it.

Incidentally both my parents died at 73 of vascular dementia leading to heart failure so I do worry rather about vascular stuff. Also did you know that there has been a huge upsurge in autoimmune disease since the Ebola crisis? Apparently survivors are getting autoimmune diseases now - not sure which sort but I thought this very interesting if it is true.

We had another poster here that was possibly poisoned by her pigments. (pointing her brushes with her mouth!)

http://neurotalk.psychcentral.com/post1053214-621.html

I used to paint alot in the past, then I had to work overtime to pay for my son's college training etc, and didn't do much (only a little drawing)

I am returning to it now, and discovering that many of the pigments I was familiar with are gone, and replaced by synthetic non heavy metal ones. ( I use watercolors predominately).. so I am buying a whole new range of colors!
(this has been a surprisingly complex task!)

Cobalt is on the way out.
Cadmium reds and yellows are being replaced
Chromium greens
Manganese blue
Mercury
(of course Lead white...but that has been gone a long time)
There is arsenic in many earth pigments too.

I was always very careful not to get anything on my skin.

You can also breathe in pigments from pastels. I see pastels are much less commonly used today compared to the past.

The mineral spirits used for clean up of oil based paints are also not good long term for nerves.

When you get your blood work done, have them test you for heavy metals, just to see what is going on.

To help with sluggish gall bladder, there is a supplement for that. Taurine has been found to complex the cholesterol in bile and help move it out so it won't form stones. I use it because I have gall bladder attacks but all the tests show "no stones".
500mg a day whether I need it or not seems to prevent the big attacks. When you get yours removed, you will still have to help the bile move out... so if this works for you now, you will still need it post surgically. (people taking lithium cannot take taurine)

The MTHFR problem is becoming very common as it is being tested for with the new DNA testing.
Here is a link to one very good resource on the net:
http://mthfr.net/
B12 and folic acid must be methylated in the body to work in the tissues. Since you had 2 drugs that deplete folate, if you could have a MTHFR issue, you would become MORE depleted than other people. So the testing for this may reveal quite a bit for you. The solution is to use methylcobalamin B12 and methylfolate (Metafolin). Poor methylation means you cannot repair nerves and other tissue (blood vessels)..

Whew that's s relief re 52 because I'm only just ready to go for new life, renewed ambition as an artist etc now youngest son is about to leave for university. These references to ageing were starting to depress me as much as the rest!

I have been sufficiently alarmed by the inflammatory process over the last four or more years that I was willing to try anything. In my heart I know that my neuropathic symptoms are inflammatory/ immune mediated because of the way the RA showed up so dramatically and manifestly. I will not accept that this is idiopathic and will keep investigating and asking others to investigate because I feel that there is something I or doctors could be giving me to halt this process.

However in guessing that your neuropathy has been confirmed as immune mediated and this is how you were offered IVIG? I am fairly sure that in this present health area I won't qualify for this treatment. Only those with proven immune mediated inflammatory polymeuropathies qualify and mine falls under rheumatic so the neurologist is highly unlikely to let this problem fall into the beleaguered neurology department's responsibility. I will ask but Ivig is very expensive and a scare resource. Maybe when I move to a more forward thinking area it can become an option but I need to find some energy to relocate first - even cleaning up the kitchen earlier has led me back to my bed foofed!

Do you ever get this kind of pain where it is as if something is gripping you everywhere? So if you move you might explode like you have a bomb attached? So you stay extremely still in its vice like grip in the hope that it will lift itself and let you breathe again normally?

I don't know anymore if I'm imagining this or if this corresponds with others experience of neuropathic pain. It becomes like a wetsuit of pain in the night and includes my jaw so I feel I can't even cry out. It's almost exquisite in its awfulness. In fact in going to ask this as a separate question/ post so please respond if you would like to. In the context of this post I'm not sure if it will help to describe it in this way to my neurologist on Wednesday or if I'm being too descriptive and pain is just described as sharp, dull etc?

Handprint.com is a wonderful resource... I am often amazed that this fellow did all this work!

Here is his portion about toxicities:
http://handprint.com/HP/WCL/pigmt6.html#toxicity

But the whole site is really helpful about quality of brushes, pigments, paper, and manufacturers of watercolor products.
I can only manage a little bit each day.... it can be so overwhelming!

Thanks Mrs D but I only stitch these days and am mostly too exhausted even got that!

Hi MrsD and other artists.

I recently read an interesting book on the history of colour, pigments, origins, toxicity etc. It's called "Colour" by Victoria Finlay ISBN No. 0 340 733 292
Well written and researched for anyone interested in this topic.

Mat, it appears that you could explore the heavy metals... they mostly stay in the body. They require special chelators to remove or dialysis.

Blood testing you are having anyway... so might as well test this.

Thanks. I will explain to my GP on Monday morning that the consultant first wondered about toxicity and let her decide which tests to run.

I have been really struggling with my jaw and the sweats today and am thinking hard about what was said to me over the weekend. I don't think this is toxicity because I only use embroidery threads now. And although I do often feel as if I've been poisoned by something I suppose this is how an autoimmune disease(s) operate. The heat surges started five years ago or more in my wrists and now the same thing is everywhere and alternates between whole body heat surges and clammy cold sweats and icy feet.

It is much more likely that the doctors were right in believing that, after a long weekend of observing me and checking my bloods daily, the inflammatory process was part of either an unidentified Autoimmune disease or else my rheumatologist was right to think that it's actually part of my RA.

The thing that upset me is that i have no sign these days of synovial swelling and have negative or equivocal autoantibodies and therefore won't qualify for any of the "big gun" drugs ie Biologics or IVIG.

I suppose what I need to ask my neurologist is whether he thinks that this is all a rheumatology matter i.e that the neuropathy is secondary to the inflammatory process of RA flaring, or whether it could actually be an inflammatory neuropathy still? I think he will say it's a rheumatology matter - not neurological.

However I believe I need them to alter the disease activity scoring system for me, to include my nerves, blood vessels and jaw so that I can meet the criteria for further immunesuppressant medication. I think I do probably just have a very systemic type of RA which overlaps with other diseases, causing inflammation in the nerves. But it could be that I actually have inflammation in the joints and just because it's seronegative and there no visible presence of hot swollen joints my rheumatologist is now waiting to see if the RA is causing my jaw problems perhaps before offering me further treatment.