MAT I have so many neurological issues I can't count them all. And most of them fall into 'unclear diagnosis' and 'no real treatment exists'.

In the long run, once major terrible things that CAN be treated are ruled out (like cancer and diabetes and chemical poisoning, nerve damage from spinal compression, brain tumors, and so on) what is left is treat the symptoms and learn to live with the condition(s).

I just saw the epilepsy specialist because my neurologist wanted to be sure he wasn't missing something. He wasn't. I don't have epilepsy, even tho I have shaking and trembling of my limbs, my head, my torso, and completely collapse to the ground.

The epilepsy specialist speculates that the problem is probably related to my autonomic system disorders, and that the messages don't track correctly so I fall to the ground (it isn't POTS, by the way, which is related to blood pressure).

That still doesn't explain the shaking and trembling, which happens sometimes several times a day.

The key is, if the medication I was talking to attempt to moderate the problem, Depakote, isn't working, and it isn't, then there isn't really anything else.

So I am just stuck here.

We all want clear diagnoses, with really accurate treatments that stop the problems in their tracks.

What I do know is that I have a seriously disordered immune system, which attacks my organs/systems and leaves me with damage.

That's about it. I treat with some medications, wear leg braces, and don't stay in the house alone without wearing my medical alert, and don't ever go out alone. I can't drive any more.

Thank goodness for these forums.

Hugs, ElaineD

Elaine I'm always humbled when I read of your struggles with such horrid and disabling symptoms - and your stoicism and warmth to others.

But although I share many of your symptoms, to a lesser extent (maybe because I think I'm younger than you so haven't suffered them for as long and also because mine have a different cause), I do now have a firm diagnosis of a serious autoimmune disease (Sjögren's is on a par with Diabetes and significantly increases Lymphoma risk as I'm sure you know), which, if treated at source, should in theory make the SFN manageable. If it's not already too late that is.

I have a very overactive immune system rather than an immune system disorder - and I think there is a difference although I know it's very possible to have both. For example I never seem to catch any bugs at all even when taking immunesuppressants. But drug allergies, anti depressants and anti convulscents will knock my immune system for six by messing with my serertonin levels and my brain pathways. The last one I tried, Cymbalta, had me so weakened by retching, migraines and psychosis that I got pneumonia, pancreatitis and sepsis all in the space of six months!

I looked back at an old post of yours on the Sjögren's World forum (at least I'm fairly sure it was you!) and read that you believe that you can only have Raynauds if your hands experience colour changes too.

I think this is actually not the case and the colour changes can affect any extremity, and for all we know can affect our organs too. And yes hands are most commonly affected - but hey- when were either of us common?!!

If you are still doubtful about this then you could google images of Raynauds in feet and I'm sure you will recognise the pictures as I do. In fact I have several friends who have been told that the burning and numbness in their feet has been caused by Raynauds. They don't even have this parasthesia or cold in their hands at all. I think the two can overlap very often - but the colour changes do signify that Raynauds is definitely somewhere in the mix. My late dad, grandad and uncle all had diabetic neuropathy long before their late onset diabetes was diagnosed and none had Raynauds whitening of toes as far as I'm aware.

I am just not ready for resignation about all this. I had to fight hard for a histological diagnosis of Sjögren's and, once the possibility of co-existing Scleroderma has been excluded (hopefully - it's a truly horrible disease), then I will review my options once more. My lip biopsy showed 100% definitive for Sjögren's syndrome.

Meanwhile I'll just have to live with widespread flaring SFN pain because Gaberpentin and others made me very ill and if the Cellcept doesn't work, then I'm told by my neurologist and rheumatolgist that I'm all out of options apart from Pregabalin - which I wouldn't touch for love nor money!

Mat x

--ANY of the "rheumatic" autoimmune conditions (the ones associated with some version of the Anti-nuclear antibody--a wide range that includes lupus, Sjogren's, Bechet's, polarteritis, Churg-Strauss, scleroderma, etc.) can have effects on the blood vessel tissue and the connective tissue adjoining it that might result in the trophic changes you are describing.

Many of these conditions have predelictions for certain types of tissue damage, but also damage others--Sjogren's goes for moisture producing tissue, for example, but as you've seen it certainly can damage nerves and other tissue. And blood vessels are among the most common "global" targets. So it is certainly possible to have circulatory issues that can be described as "secondary Raynaud's".

Take a look (also) at:

Immune Neuropathies: Axonal

MAT,

I'm pretty sure you have mentioned having the Livedo reticularis, as I do. Even if this is mild (which I think you said), it is still an indication of a vasospastic process in your blood vessels (Livedo is an autonomic dysfunction caused by spasms of the medium sized blood vessels in the skin). Since you have this already, it is a good indication that your other skin & digit changes are very possibly vascular/circulatory in nature as well...as in secondary Raynaud's or other damage to the blood vessels.

Have you thought about having an ABI done on your extremities? Ankle-Brachial Index test. Tests if your legs are getting proper amount of blood supply. Also, ultrasound test. I have shiny feet and sfn, raynauds and erythromelilgia. So, my feet become red, white and blue.....hot, red and ice cold. I also have PAD, peripheral artery disease.