Wow that's amazing Enbloc - I'd be so delighted to have a doctor of this calibre! It's so well written and well set out. Lucky you in this regard!

The APS tests were run last September and the third, most obscure one is still to come back from January.

I don't get livido anywhere but knees and feet really and even on my legs it's not that noticeable. Nor have I ever had blood clotting issues as far as I'm aware. And I did have a miscarriage but went on to have three sons.

I agree with you that the disappearance of the vestibular issue with steroids is significant but my rheumatologist didn't seem to want to take it on board. I suppose I don't want to be stuck on steroids forever either but nor do I want to be forever walking in tiptoes clutching walls and stationary objects to get my bearings.

Also my latest realisation is that, along with my dry eyes my scalp is alive with tingle. I haven't been able to stop itching it for months and yet, unlike previous stages of my life with eczema abs alopecia, there is no flaking or dryness to be seen. It only occurred to me a few days ago that my scalp has joined in the burning and parasthesia since I came off methotrexate and more recently off steroids. But how to get back onto immunesuppressant medication with no swollen joints or positive antibodies is another matter entirely.

Finally another question Enbloc. Do you have constipation with your PN/ Sjogrens? This started for me in December and I have heartburn too. The GP suggested it was just stress related but it came on very suddenly for out of the blue and is still a real problem for me. She did say the neurologist may be able to help - which baffled me but perhaps you might understand this more than I do? Constipation as part of neuropathy?

I hear ya. Really really hard to accept. Every time I think I can accept it, I can't. I think making the best of it and accepting it has to be different for me. If I accept this **** then it will be like giving up. There has to be something that can stop this process.
From autoimmunity to protozoans, parasites, microbes, viral causes, metabolic issues..... there is a reason our nerves are being damaged and there has to be a solution. I can't imagine living the rest of my life like this. I'm trying to make the best of it as we all are.

Actually, both the itching (without dryness, flaking, etc) and constipation are signs of neuropathy.

Pruritus/itching for neuropathy is different than a normal itch. It is NOT due to dry skin--but instead an annoying itch that you never seem to be able to satisfy with scratching, and is definitely part of SFN. I have it, sometimes, all over. It can drive you nuts, because, as I said, no matter how much your scratch, it doesn't go away...until it just fades away in time (which could be minutes, hours, days, etc). Many people have talked about the itching here on Neurotalk, so you might be able to find other threads/posts.

Constipation can have MANY different causes, but it CAN be related to neuropathy. Constipation can be an autonomic dysfunction, from the lack of GI motility. Being that you mentioned the heartburn type symptoms, you may have some delayed emptying. There are non-invasive tests for GI motility (gastric empty study). Very easy test where you eat some contrast laced eggs and then lay down for 2-3 hours while they scan the movement of the contrast until it empties from your stomach. The amount of time it takes determines the result.

Actually, those with Sjogren's also have constipation just from the GI track dryness. This type of constipation is different...more regular movements, but hard stools. Whereas constipation from neuropathy is more typical constipation...just not moving normally.

You have to be one of the most well informed and clear thinking people I've had the good fortune to come across on a forum Enbloc. I'm so very appreciative!

Without going into detail, either Sjogrens dryness or autonomic neuropathy could apply to me frankly. It all started with a week of being sick in December but I used to get very blocked up periodically as a child and young adult. When I was eleven I was rushed into hospital with probable appendicitis that turned out to be constipation - humiliating!

However I rarely get the other extreme and stools were very health until December - which makes it stranger because the onset was sudden and I'm now living on Laxido powders despite eating the same very healthy diet as always.

But your doctor says in his article that neuro version of Sjogrens can cause autonomic neuropathy so guessing it could be either or both. Sometimes I spontaneously vomit for no apparent reason too but thankfully this is rare so far. My rheumatologist says in his recent letter that I mentioned autonomic neuropathy to him. He wrote that possibly neurology or, if orthostatic hypotension starts, endocrinology might be of use with diagnosing this. Not sure about the endocrine link and my GP refused to refer me to an endocrinologist as she couldn't see any purpose. Any thoughts? I could try and see one privately but I don't think I have orthostatic hypotension - just full on hypertension! Mat x

There is NO need for endo to do Dx of autonomic dysfunction...it is NOT their primary field. The two fields that Dx this are neuro and cardio (especially is orthostatic hypotension is involved).

Thanks. I wonder what on earth my rheumatologist was thinking of then? I think you've answered this question from me before (sorry) but is it possible to have autonomic neuropathy without having orthostatic hypotension?

Looking thru this thread, and I didn't mention it here, but elsewhere on the PN area. A friend who is now 85, has lived with neuropathy for 15+ yrs due to statin drugs...she did all the doctor drugs and lived with the side effects, but she did them for many yrs. For the last 5 yrs or so, she has been taking grape seed extract and off the drugs and so much less pain overall. She still takes tylenol or advil when needed, but she's sold on grape seed ex. And this woman is allopathic all the way. She heard me so long that she finally got on grape seed ex. She buys hers at costco....

Yes, there is many facets of autonomic neuropathy. Some people just have sweating or balance issues, while others have urinary problems and/or GI stuff. Some have everything (cardiac included) or just one thing. There is a hefty list of systems involved.

BTW, the livedo reticluaris IS an autonomic dysfunction too. It is spasms of the medium sized blood vessels...and this is caused by autonomic dysfunction in the vascular system. It is also possible to get the cardiac vaso-spasms (another autonomic dysfunction) and this feels just like a heart attack because the vessels can actually collapse to some degree in the spasm process and reduce blood flow to/from the heart.

I want to thank you for all the kind words. Sadly, my knowledge mostly comes from personal experience. I have ALL facets involved in my dysautonomia, so I'm quite familiar with the testing, symptoms, etc.

I realise that your knowledge comes, very regrettably, from personal experience Enbloc. But it's the calm and collected way you deliver your comments that I find so reassuring and helpful.

I'm not in your league yet sympatically which is just as well given that I don't have access to much cutting edge thinking in rheumatology or neurology in my neck of the woods. Most doctors I've come across still see Sjogrens as a disease that mainly affects the eyes and mouth and possibly the vagina although it's not very Scottish to mention this! - and is usually just seen as a relatively minor player compared to RA, Lupus, Scleroderma or Vasculitis.

But as I collect more and more autonomic symptoms on top of existing ones, I realise that slowly but surely I'm being affected by neuropathy in ways that I never anticipated in a million years. This thing may not kill me directly but I could have a stroke, heart attack, fall down steps and break my neck or walk into a moving vehicle and no one would know that it was the neuropathy that killed or paralysed me?

I'm customising an old wooden walking stick tonight to make it more presentable so I can use it in public. I bought a collapsible walking stick in an airport three years ago during an RA flare. At that stage my biggest fear was being disabled by joint erosions. The walking stick I bought then isn't fit for purpose because the joints wobble a little and anyway it's ugly. Now I'm having to resort to a stick because I frequently miss steps, swirl with swirls (decorative floor surfaces), feel disembodied and disorientated in crowds or if I turn my head or tilt my head to look up at something or if lighting changes unexpectedly or if a large dog runs past me. My spatial awareness in confined spaces is kaput!

So I'm customising a stick to prod at the ground in front of me rather than to stabilise myself due to painful stiff joints. Of course my friends and family will all assume it's because of RA and that's okay except my new rheumatologist doesn't believe I have it because he didn't see it for himself and it's long gone.

From what you are saying I'm resolved to keep learning and to look for a rheumatologist who can at least think outside the box. I will print off your doctor's article about Sjogren's neuro symptoms and ask the neurologist what he or she thinks about it. Only about ten more weeks of research time left for me to wait!

Okay thanks Caroline - I'll give anything a try but I think that the effectiveness of any suppliment will depend on what is causing the PN to begin with. I would never agree to try statins.

I'll look in our UK health food chain store for this extract and come back to you here if it works miracles, or even half miracles!