Methotrexate and sulfasalazine both deplete folate. Did you supplement this?

When people end up here, with dead ends from doctors and lots of time spent with little improvement, it is time for the DNA testing for methylation errors.

MTHFR mutations are common and if one is heterozygous for them, they manage for part of their lives at substandard levels, and finally crash when aging.

23andme is one OTC affordable place to get tested. I'd seriously consider it.

Once you get that gall bladder out, you might feel much better.
A low grade infection with inflammation there can make one very ill.

I am still curious if your art activities are exposing you to some toxin...pigments, solvents?

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

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)..

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.

[QUOTE=MAT52;114537

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.[/QUOTE]

I can relate to this! I have sensory and autonomic small fiber neuropathy with a positive ANA, and "the antibody profile of a lupus patient" at 10 times the normal upper limit. Yet my rheumatologist won't diagnose me because I don't have the typical skin or joint manifestations of lupus. She says, "you don't want to have lupus," but naming it won't change my condition and I do want a diagnosis!

You were given the stronger immune suppression medications (imuran) due to the RA not the neuropathy--right?? That must be why you were started on that before trying ivig.
Yes, my neuropathy is THOUGHT to be immune related because of an abnormal antibody found. I think too, because nothing else could be found, no family history, negative for: MS, lyme, celiac, diabetes, sjrogens. nothing found in toxicity panel. normal lumbar pucture, normal rhemotoid factors, abnormal sural nerve biopsy and abnormal emg/ncv. Think that was all the big ones.
As for the pain description, I would be sure to tell the doctor in enough description so he/she understands how bad it is. It sounds like pain is your worst symptom and primary concern right now. Be sure they understand how bad it is and get a treatment plan and a RX before you walk out their door. I like to repeat back to them the next plan/step to be sure we are both on the same page. Once we are out that door, they are onto the next person dealing with a whole new set of problems.
I don't have pain, numbness and weakness are my symptoms--weakness being my main concern.
My youngest son just finished his 1st year of college too. I have a daughter who just finished her last/4th year of nursing school and another son who does computer work. Thankfully this neuropathy didn't hit me until they were older. It would be so much more difficult with young children.
I feel bad for the people who are dealing with this and young children.

Is this the book? (can't find the ISBN match... perhaps new printing or edition?)
http://www.amazon.com/Color-Natural-...ictoria+Finlay