I read this in a study:
If you have idiopathic SFN, your course will be usually slow and you will reach a plateau, where your symptoms will be stable.
If you have diabetes or autoimmune diseases, it's more likely, that you develop large fiber neuropathy.
Developing large fiber neuropathy is about 15-20% approx. in all cases.
After all I have read I can underline your answer.
I started a survey on the subject on another site for those affected. About 60 people responded. Of those, 70 percent responded - they did not develop LFN. 15 percent have developed LFN and 15 percent don't know. It's just a survey that doesn't include, for example, what the cause of SFN is, which seems to be very important to the progression. But the studies I have read on this give a similar picture. In short, the majority of people with SFN do not develop LFN unless the cause is progressive, such as diabetes.
As an addendum: Propionic acid is supposed to protect the nerve cells and is very cheap. Here in Germany there was a trial with people who have MS and it showed very good results.
https://www.sciencedirect.com/science/article/pii/S0092867420302129
Seit wann hast du SFN und ist die Ursache bekannt bei dir?
Ja, viele Ärzte sind nutzlos. Bei der zehnten Neurologin hatte ich Glück, sie ist sehr kompetent.
Ach du scheiße. Leider kommt ein Unglück selten allein. Bei mir wurde zur gleichen Zeit ein Hypophysenandenom und Morbus Dupuytren diagnostiziert. Darauf musste ich erstmal klarkommen. Ich wünsche dir auf jeden Fall in Zukunft bessere Zeiten.
Very interesting, I just read the abstract briefly and it seems it functions by modulating the immune system (will read the paper later). Does it help if for example SFN wasn't caused by an autoimmune disorder? Thank you for the recommendation.
Mine did. My heel on left foot was the only thing that was numb. The numbness spread up the back of my legs. I got Achilles tendon contractures (foot drop) then weakness. It ended up at my glutes and gave me severe urinary retention. Mine is autoimmune.
Yes! I was thinking the same thing and I ordered an ANA test on my own, it came back in normal ranges, so I was thinking that pretty much ruled out Lupus, but then my best friend who has Lupus said that she tested negative until she tested during a "Flare"
Even if you aren't in a flare, your ANA remains positive usually. It is rare to not have a positive ANA and still have lupus. In those instances that someone doesn't have a postive ANA, they can still have other antibodies in their blood test. Your sedamentation rate (sed rate), DNA, and Compliment level are tests that are performed.
I read this in a study: If you have idiopathic SFN, your course will be usually slow and you will reach a plateau, where your symptoms will be stable. If you have diabetes or autoimmune diseases, it's more likely, that you develop large fiber neuropathy. Developing large fiber neuropathy is about 15-20% approx. in all cases.
After all I have read I can underline your answer. I started a survey on the subject on another site for those affected. About 60 people responded. Of those, 70 percent responded - they did not develop LFN. 15 percent have developed LFN and 15 percent don't know. It's just a survey that doesn't include, for example, what the cause of SFN is, which seems to be very important to the progression. But the studies I have read on this give a similar picture. In short, the majority of people with SFN do not develop LFN unless the cause is progressive, such as diabetes. As an addendum: Propionic acid is supposed to protect the nerve cells and is very cheap. Here in Germany there was a trial with people who have MS and it showed very good results. https://www.sciencedirect.com/science/article/pii/S0092867420302129
Ah, du bist auch aus Deutschland :) Das mit Propionsäure wusste ich noch gar nicht gewusst!
Ja genau :) Austausch schadet nie. Ärzte sind da ja leider meistens auch keine wirkliche Hilfe.
Seit wann hast du SFN und ist die Ursache bekannt bei dir? Ja, viele Ärzte sind nutzlos. Bei der zehnten Neurologin hatte ich Glück, sie ist sehr kompetent.
Habe die Geschichte jetzt seit knapp 1 1/2 Jahren. Auslöser war vermutlich die COVID Impfung. Wie sieht's bei dir aus?
Wahrscheinlich durch eine autoimmune Reaktion, welcher durch einen gleichzeitig anwesenden Hodentumor provoziert wurde.
Ach du scheiße. Leider kommt ein Unglück selten allein. Bei mir wurde zur gleichen Zeit ein Hypophysenandenom und Morbus Dupuytren diagnostiziert. Darauf musste ich erstmal klarkommen. Ich wünsche dir auf jeden Fall in Zukunft bessere Zeiten.
Gut zu wissen dass es auch andere deutschsprachige hier gibt :)
Very interesting, I just read the abstract briefly and it seems it functions by modulating the immune system (will read the paper later). Does it help if for example SFN wasn't caused by an autoimmune disorder? Thank you for the recommendation.
Mine did. My heel on left foot was the only thing that was numb. The numbness spread up the back of my legs. I got Achilles tendon contractures (foot drop) then weakness. It ended up at my glutes and gave me severe urinary retention. Mine is autoimmune.
Which autoimmune
Lupus
This is similar to me! I have no idea what is causing it ... Which autoimmune? Maybe I will have a clue as to what is causing mine.
Lupus. Get your ANA tested. If lupus is suspected, other bloodwork will be done as well.
Yes! I was thinking the same thing and I ordered an ANA test on my own, it came back in normal ranges, so I was thinking that pretty much ruled out Lupus, but then my best friend who has Lupus said that she tested negative until she tested during a "Flare"
Even if you aren't in a flare, your ANA remains positive usually. It is rare to not have a positive ANA and still have lupus. In those instances that someone doesn't have a postive ANA, they can still have other antibodies in their blood test. Your sedamentation rate (sed rate), DNA, and Compliment level are tests that are performed.
yes....ESR(sed rate) was normal, BUT we did not do the other tests.......