I hope you are not taking oxide.... that is not appreciably absorbed.

You might be having some pain, as the circulation returns...like when you get really get cold and suddenly warm your hands and they hurt? I'd continue to see if the pain subsides.

And don't soak in hot water... only lukewarm.

I have a research neurologist, whom I have seen for 5 years, a rheumatologist who is also a scleroderma specialist, altho I am not diagnosed with that (no substantial skin symptoms, yet, maybe never, I hope, just the weird tight pulling, face rash thing, and all kinds of -itis's, bursitis, tendonitis, etc., which is being watched). I feel like I am living in a very tight wetsuit....(My rheumie does all kinds of autoimmune stuff), and also a research gastro guy. I think these folks are about as good as one gets. I am being treated with IGg. Every one is doing their best. I can't complain.

Yes, mine is systemic, because, small fibers are present profusely in the autonomic system. My neuro contends that Sjogren's is actually neuro, but inflammatory neuro. I don't burn much anywhere, other than my mouth. I sweat too, but not to heat. My skin apparently does not sense heat. I will sweat to exercise, but the doc feels not enough and that presents a risk for heatstroke, which I have never had. I guess I have the sense to get out of the heat.

Yes, it is a pickle. My stupid body is having itself for lunch. After a decade of being told it was in my head....if only some one had thought to do a skin biopsy. I was at first diagnosed with fibro, altho I had had Lyme, and it was caught in the first month. They stuck with fibro, and I kept telling them I was too sick for that. My lip biopsy came back + and they told me it was a mistake. LOL. Eventually I had to get out of the HMO.

I was in that hideous HMO for over 10 years, and did not get diagnosed until I got out of it. Within 2 years of getting out, I was diagnosed first with neuropathy and later with the Sjogren's, and additional diagnoses are being considered....my ANA pattern has some additional clues, and they are just watching for specific antibodies. Always a waiting game. ( I think it is in the realm of possibility that this was triggered by Lyme. ) Yes, I was treated for Lyme with non-neurotoxic antibiotics, three times, no less, once for a substantial time. I don't think antibiotics help at this stage. My family also has a history of autoimmune disorders, so who knows?

It took 6 years from a + lip biopsy to a highly + ANA.

Thanks. I tried it again with less hot water so that it was warmer than mid warm (just warm feels like icy cold to me and is unbearable--our house if very cold) but had the same results--more pain than usual at bedtime. I also noted that after my infrared sauna 2 days ago my pain was worse, so it does seem that heating up my feet before bedtime worsens my PN. I'm trying different topical applications and am having some success with that.

I have a autoimmune PN and I have terrible circulation, but, my circulation problems (reynauds) are part of my antiphospholipid syndrome, while the neuropathy is part of my lupus, so they are not really connected. Also, the pain of each condition is different, so I am able to tell whether the pain is associated with my reynauds or my PN.

Although I frequently have very cold feet (red/blue/purple or waxy white in colour) I have never really been bothered by them being cold, I really don't notice it. I have no clues why, but that's how it has always been with my reynauds. With reynauds, the skin always go through a series of colours as well as just feeling cold to the touch.

I am a little puzzled by the white spots on your arms - I have poor capilliary refill, but only get the white spots when my skin is poked with a finger to test my refill. I take longer than normal to refill, but the normal colour does return. I don't have spots that stay white all the time - if you do, I would enquire further into this.
hth
raglet

Akimbo, Raglet makes a good point. Are the white spots there all the time? If so, they can be biopsied. I have white spots too, have for probably 2 decades. No one really knows what they are. My mom had vitiligo (supposedly). Docs say this is not vitiligo, and it isn't as bad as my mom's pigment issues were. I have not had a biopsy on this either, I just got sick of all the tests, lol.

Also, your conditions could be related, Raglet. The CREST to Scleroderma continuum does include PN. PN is more common in this than once thought. The same vasospastic disturbance of Raynauds can also cause PN, or visa versa, (chicken or the egg situation). I too, have vasospasm, but not to the extent of things turning blue. My hands and face hurt badly when exposed to cold,like an ice cream headache. My feet are cold and dead anyway, so not much bothers them. Nurses at the infusion clinic are aware that vasospasm happens and when it does, getting an IV in is tough. Even if well hydrated. They wrap my arm in warm compresses, they call it a spa treatment, lol.

PN is being recognized now, as being responsible for many of the problems seen in autoimmune disorders.

Also, my ENA at this point is negative, ANA is highly positive, so I am sitting in no man's land as far as the known diseases, except for the salivary gland biopsy, and that is + in many if not most autoimmune disease. Raglet how is your ENA panel? My neuro says that there are many yet to be identified antibodies that the ENA won't show, but ANA will be +. That said, you can still be seronegative and have autoimmune disease. I was seroneg for a decade.

Sounds like we have some commonalities. I am going back to bed, my 'migraine' is not going away. I guess I overdid it during the holidays.

cyclelops - I am really lucky when it comes to my ENA testing, and I just seem to make loads of antibodies. I really appreciate this, as so many people struggle with getting a dx, while this has never been a problem for me as I have classic blood tests for lupus, antiphospholipid syndrome, and sjogrens syndrome. From memory I have positive ANA, anti-ds-dna's, SSA, lupus anti coagulant, anticardiolipin antibodies, low level RNP, and more that I have forgotten. I know it seems strange but I really do feel fortunate to have so many positive antibodies, plus supporting tests like low C3 & C4, low wbc, etc etc, as it gives me a very clear diagnosis which I really appreciate. From memory my anti ribosomal P was also positive (which is associated with cns disease) but I only had it tested once as it had to be sent to a lab in another country.

I think that how autoimmune disease affects us varies a lot from individual to individual. For me, I don't feel that my PN is associated with my circulation problems, but then it may well be for other people. We are all just so unique when it comes to how our disease is expressed which makes it a real challenge in finding effective treatments.

cheers
raglet

Raglet, in addition to the high ANA, I have a low C4 and elevated CRP. I think there are lots of antibodies that still need to be tested for. I have had the basic ENA. Given I have a nucleolar pattern (at times), I am surprised nothing came up on ENA. They have never mentioned the others and I don't think they did anticardiolipin or some of the other things you mentioned. I had 4 normal pregnancies so I assume I don't have antiphospholipid issues, unless they developed later. I did have the neuronal antibodies done 5 years ago, and it is worth a repeat I think.

I don't know if I have circulation issues, but given the cold feet, migraines, labile BP, and vasospasm, I assume I do. I try not to think about it.

They did not want to test for any antibodies this last time, due to IVIg. I wonder how they can monitor disease without testing. Hmm. They did say next time they will run the ANA and ENA. I will ask for the other antibody tests then. I think because I had Lyme, they are a bit reluctant to nail me with the -mab drugs or anything that causes severe immunosuppression. It is a double edge sword. I feel really rotten lots of days.

You have a boatload of autoimmune issues! What are you being treated with and does it help?

Raglet,

I am in 'duh' mode. I was told I have livedo reticularis, likely related to the autoimmune stuff. So, I guess, my assumption is correct. There is some kind of vasculopathy or 'itis. Lately the dizziness and occassional vertigo has been bad.

I am really lucky in that i am on rituxan, which is a monoclonal b antibody and depletes my b cells, which really helps. It is the first treatment I have been on that has been helpful, and I have tried them all (everything from metho to cytoxan). It doesn't do much if anything for my neuropathy though (mainly motor), and that is still progressing, but it has done amazing stuff for my cognitions which is the main thing. It has cut right back on my hospital admissions, I love it. Still have a lot of neuro stuff going on, but as long as I can think I can cope with it.

raglet

They have brought up Rituxan to me, but I am scared as I had Lyme, and I am worried about two things, one is a mouse chimeric monoclonal antibody...(Borrelia the organism that causes Lyme spends part of its life cycle in a mouse) and two, if I cause severe immunosuppression and the Lyme or some other germ roars back....then what. So, I am not sure what to do. Human monoclonal antibodies will soon be out and I wonder if I can wait until that happens. If not, then I will have to try Rituxan, and take the risk.

My doc said they are using Rituxan for neuropathy of sarc, with good luck. But you don't think it helped...hmmm, maybe it won't help the neuropathy I have much either. On the other hand, the other symptoms I have that are not related to PN are debilitating too.

I suppose cellcept is an option that could be combined with IVIG. That has its downsides too.

I keep thinking at some point, something will force my hand.