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Shiny soles plus Raynaud's Phenomenon in feet secondary to SFN damage?

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Old 02-02-2017, 10:37 AM   #11
ElaineD
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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
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Old 02-02-2017, 11:24 AM   #12
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Originally Posted by ElaineD View Post
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
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Last edited by MAT52; 02-02-2017 at 11:52 AM.
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Old 02-03-2017, 06:36 AM   #13
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Default Just to mention--

--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

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Old 02-03-2017, 08:32 PM   #14
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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.
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Old 02-09-2017, 08:51 PM   #15
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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.
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Old 08-12-2018, 02:46 PM   #16
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Hi there. Sorry never replied to this - must have missed it. I’ve only just found an app which sends me alerts - so hopeless with technology!

My Livedo on feet isn’t mild really - my feet go very dark purplish grey. I see a vascular doctor who says this is the small fibre neuropathy damage causing a vascular response. My thoughts are that I probably have some form of small vessel vasculitis occurring on and off because I have other symptoms and signs such as blood in pee and dark purple petechiae which come and go on my feet and legs intermittently. So I suspect the vascular dr is slightly wrong and the small vessel vasculitis is causing the small fibre neuropathy rather than the other way round. But I haven’t confirmed either with skin biopsy yet so we will see.


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Old 08-13-2018, 08:58 PM   #17
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Thanks. I'm all too aware of this mild dysautonomia having been told by my neurologist that I probably have what she calls "mild ganglionopathy" - a form of autonomic dysfunction associated with my confirmed Sjögren's Syndrome (i.e. not idiopathic) alongside presumed SFN. I have GI problems at both ends and don't sweat appropriately, suffer sexual disfunction and cranial neuropathy - and have disequillbrium and tinnitus - all apparently caused by proprioceptin issues as part of the presumed SFN and Ganglionopathy of my diagnostically confirmed Sjögren's. An audiologist and opthamologist have both recently confirmed that my issues are most probably neurological as part of my rheumatic disease.

So the thing I'm really asking about is whether this sometimes includes a vasospastic process, if a person has colour and skin density changes in their digits and extremities - such as I have and ElaineD has described? And does this come under the heading of secondary Raynauds Phenomenon or not? Or is a different clinical process involved in causing these colour changes as part of SFN to the process involved in secondary Raynauds Phenomenon to advanced SFN? I'm aware that both can lead to ulcerations and loss of digits/ gangrene at their most severe - so what is the difference, if any, between these two conditions?

I'm still very confused about this and am being assessed for possible Scleroderma so it is important to me that I get to the bottom of this I feel. My sense is telling me, after these replies, that my problems are neuropathic and autonomic but this has not yet been histologically or physiologically confirmed. The first rheumatologist thought SFN but skin biopsy did not confirm. Then my GP and an eminent rheumatology professor told me three years ago that t was secondary Raynauds rather than peripheral neuropathy.

Now a second neurologist is saying it's SFN with gangliopathy, but says tests are not available where I live and anyway aren't necessary because my description and Sjögren's diagnosis are enough to go by. They aren't enough for me though - I like hard evidence rather than presumed diagnoses!

And I'm still none the wiser I admit but I worry most about atherosclerosis/ PAD as a third alternative possibility because of my family history.
Push for the "hard evidence" and get PAD testing (this should definitely be available...as basic testing just includes special BP readings in legs/arms)...and get the skin biopsy to confirm the SFN...and confirm any autonomic damage as well.
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Old 08-14-2018, 02:24 AM   #18
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My vascular dr would be the person to push with for PAD testing. But mine is bilateral. We’ve discussed the colour changes which he says are a benign response to temperature change due to nerve damage from SFN. He says this is permanent damage so there’s nothing that can be done. He thinks all my issues relate to SFN but he did mention small vessel Vasculitis too. I see him or rheum again a week today and have sent them images of the petechiae already.

My neurology appointment has been triaged by them and connective tissue clinic will want to wait to see what neuro says. But I feel strongly that this bouncing must stop and rheum must take the lead as I have a rheumatic disease not a neurological one. The Parkinson’s like symptoms are most unlikely to be PD but more likely to be Parkinsonism - movement disorder due to no one treating the SFN. That said I don’t want skin biopsies galore if they need to take one off the spots to check for IgA Vasculitis. X




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Old 08-14-2018, 02:27 AM   #19
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Ps and the colour changes and sensory issues often affect my hands too which they wouldn’t if it was PAD.


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