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01-31-2017, 06:26 PM | #1 | ||
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My feet feel like ice blocks to touch but burn sensation wise. I have this weakness severely. I know this symptom you describe. Sometimes so bad it takes everything I have not to lie down all day. My legs are real bad. Autoimmune action is known to cause horrendous fatigue. If it feels like more than that to you - mine certainly is more than this - then it could be lots of other things. Nerve damage at a different level to sfn, myositis, or mitochondrial disorders are key possible culprits. It could also be neither. My research and discussions with neuro keep coming back to these 3 possibilities. |
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02-01-2017, 12:25 PM | #2 | ||
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I fret because both my parents had similar issues and both died suddenly of cardiac arrest at 73 years old. My mum was found by the coroner to have severe Atherosclerosis. She had unnamed circulation issues and similar weakness latterly along with vascular dementia. My dad had a rare type of heritary late onset diabetes. Not a great legacy! Can SFN cause Raynauds do you know - or visa versa?
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If you get lemons, make lemonade Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases Last edited by MAT52; 02-01-2017 at 12:45 PM. |
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02-01-2017, 12:51 PM | #3 | |||
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I have profound PN in my legs, and SFN in my upper body.
The soles of my feet became very shiny, my toes are purple because the nerve damage made blood flow to my toes restricted. Hot water will turn my toes completely white. Sometimes one foot will be ice cold and the other rosy pink and warm. My toes will turn white. Usually both feet are icy cold and have to wear sock to bed. Your neuropathy of whatever kind is causing the problems you have. I don't have these problems in my hands, by the way. But I do have SFN in my hands, and fingers and finger tips. I take Gabapentin and it stops the pain, burning, itching and stabbing sensation in my scalp, face, lips, tongue, neck, arms hands and fingers. Best wishes! Hugs, ElaineD |
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02-01-2017, 07:30 PM | #4 | ||
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If you get lemons, make lemonade Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases |
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"Thanks for this!" says: | ger715 (02-02-2017) |
02-02-2017, 07:05 AM | #5 | ||
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--can also involve dysfunction of the small autonomic nerves that help to control blood pressure, circulation, even the rate at which food passes through the intestinal tract.
It is not unusual for those with small-fiber neuropathy to have some degree of autonomic dysfunction, though it usually doesn't rise to the level of full blown dysautonomia. Often, it is subtle (and, as the researchers say, "subclinical".) See: Autonomic Differential Diagnosis Small Fiber Sensory Pain Differential Diagnosis |
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02-02-2017, 07:39 AM | #6 | ||
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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.
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If you get lemons, make lemonade Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases Last edited by MAT52; 02-02-2017 at 07:54 AM. |
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02-02-2017, 11:37 AM | #7 | |||
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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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"Thanks for this!" says: | ger715 (02-02-2017) |
08-13-2018, 08:58 PM | #8 | |||
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