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Joined: Oct 2014
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Tim, Ally, cemc, Sue and others- thankyou so much for your responses and advice ref my nerve pain. I have incorporated all of your advice - Im on no starch using iodine test. Hardly eating much at moment as appetite is badly affected with this bout. I am taking all supplements incuding alpha lipoic acid and omega 3's. LDN has arrived - took last night but know this takes time. Couldnt wake u this morning!

So sorry to go on but I have a real concern now regarding the advancement of my symptoms-especially my legs. What Im concerned about is that my symptoms arent my typical AS ones. I'm actually not suffering back pain really apart from the odd twinge which is why Im so confused. I worry this is another AI disease on top of the AS which is scaring me.

The burning in my legs has become severe. I have burning skin on top of my thighs with little dots that are red/brownish depending on activity. My feet are pale and white and I have dark patches of skin on ankles for over a year. The rheumy said they are from my shoes, I nearly lost my mind; they are not from my shoes for certain.

The skin on top of my thighs burns to touch and i cant even wear jeans or anything anymore as its agony. My bum cheeks burn and sting too. I thought it was just post baby stretchmarks causing nerve pain but I dont believe it is now.

I havent been able to eat properly for over a year - no appetite at all and bad food reactions - but I know thats a typical AS thing for some people (I hope it is anyway).

I have weakness in the legs and now feel it in my arms a bit too. When this all kicked off over a year ago, comments were made about how white I was. I still have whiter skin than usual but my legs are ghostly white as are my feet and I feel like the skin is changing alot.

ECG nerve conduction tests on leg came back fine - so no peripheral neuropathy (at the moment).

As suggested, I am taking every supplememt under the sun and will be straight onto the doctors tomorrow for VitD and Vit B12 deficiency.

I cant tell whether this pain in my legs is burning skin/nerves/circulaiton. It feels like it is all 3. It is getting worse and worse and I cant actuall ythink straight with the discomfort which is why Im desperately on here pestering you all.

I apologise for going on about my symptoms here and as soon as I am managing this and in less pain (optimism :-) I will stop going on!

I am quite frightened, I am a single mum with a 2 year old boy and about to lose my job. I am so worried as its getting worse. When I had the usual awful AS symptoms, they never bothered me at all. My rheumatologist is lovely but I dont believe he is taking me seriously about my legs. Im debating whether to try see a vascular person - I dont know where to begin.

I am on no meds and am going to urgently request steroids and for long terms the azulfadine as TIm suggested. I just worry that this isnt AS and that these treatments wont help as it isnt neccessarily related to my AS. (I am HLA B27)

FInally - my ESD rate and C-protein levels werent actually that high when tested 5 months ago which is why my rheumy is just shrugging me off without treatment.

Thank you all - you are my only advice and support. One day this will all be sorted and under control and I wont whinge on.
grin

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Sunny have you ever been properly tested for lyme disease? Burning pain is one of the many symptoms associated with it. Unfortunately many docs do not run or interpret the tests correctly. You want to be sure you are not dealing with lyme before beginning any type of steroids.

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Lulu, you may have mentioned this before. I am calling my GP first thing tomorrow to ask for vitB12, VitD and Lyme disease tests. Sorry if you mentioned this before. I'm shooting in one hundred directions at the moment due to pain, discomfort and worry. Thank you so much. :-)

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When requesting a lyme test you want them to run a western blot test. Ideally a lyme test run through Igenex is much more accurate but costly. Be prepared though that what the CDC defines as a positive lyme test is inaccurate. Ask for a copy of your results and do your research http://www.ilads.org/lyme/about-lyme.php

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Thanks Lulu. Think I'm going to have to go private with the Lyme. Saw doc this morning- having b12 bit d and all other inflammation checks again tomorrow. :-)

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I had some nerve pain in my feet it started to get really bad my doc gave 3 vitamin b12 injections per week for 3 weeks. It was amazing how well it worked. I still have a touch of it I'm getting the injection once per month now. Probably need it twice a month. I blamed it on enbrel because all of this came on within about 6 weeks of starting enbrel. I don't know for sure if that's what caused it. I had a lot of weird symptoms all at once.

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Hi Bax, thankyou. Just had all the blood tests done today. I kind of hope it comes back and says you have B12deficiency and I can get the injections.
I would be sure I am deficient in something as for 18 months when it all got bad I have had rapid bowel transit where everything i eat is visible the next morning (sorry to be graphic. ) I now am also on the strictest diet ever trying a combo of no starch and autoimmune paleo so all I eat is chicken, fish, some meat, some raw veg and only cooked beg that is no starch. Whats so annying is that my iodine test shows up starch in all my fruit! Leaving it on side to ripen.
Its comforting to hear that, thanks Bex. I hope the enbrel is helping out with things.

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What has the doctor said? Curious if you have been diagnosed with AS.

I cannot imagine the pain you are having, I had neuropathy for a few months, but nothing close to what you describe.

Hope you find some answers. If this is inflammation you need to get it under control.

Tim


AS may win some battles, but I will win the war.

KONK - Keep ON Kicking
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Hi Tim,

I have commenced a regime of doing alot more excercise and moving round where I can and it is helping things. I do tend to spend exceptionally long periods sat down with work and just not being as active lately. I have been onto my rheumy via email about some medication as I am just sat here not taking anything. I have asked him to come back to me about all the options including sulfasalazine.
After saying my AS was ok, my neck really flared up actually the other night so its all happening.
My rheumy says that ankylosing spondylitis symptoms and rheumatic symptoms overlap with lots of things but I dont hear many others complaining of these type of symptoms. Although,you have mentioned neuropaty.
There is definately inflammation going on here and I am pestering my rheumy like mad to give me something to control it. Im doing everything I can in my own life, excercise, no starch and no processed grains, gluten, dairy, sugars, anything bad at all. Loads of supplements.
I have just sent a stool sample off for analysis. I really hope it comes back and says loads of kleibsella and then I will feel like I have a plan and am on the right path.
I will keep you posted. :-) Thanks guys.

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Someone else mentioned bechets to me once btw, Im really worried it might be that. I really hope not. I dont have the ulcers as such but I get inflammed sore burning lips and stingy tongue along with ringing ears and all sorts of weird symptoms. I am HLA B27 and have minor damage to sacriollic and L1 and laugh2 on spine. This definately started off as AS but I worry its something new now :-(

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