Hi,

I haven't been on here for a while but ill give you a bit of an update:

As you know, my sister has had a biopsy confirming SFN. I saw a professor in 2014, saying i had increased nerve fibers in keeping with SFN. We were both sent to another professor in 2017 who deals with rare genetic neuropathies. He advised my skin biopsy was in the normal range and i had a nerve dysfunction (with no structural damage). However my sister's was showing SFN loss. However, she does not seem to have progressed or does not have any pain. Its strange. All our bloods were normal. Genetic testing normal.

My full body burning has subsisted, i haven't had this for a long time (years) just occasional painful sensations. I also have a lot of muscle twitching. I have had numerous neurological exams, which have all come back normal. I have had odd symptoms over the years, especially in my throat. I presumed the SFN dysfunction was affecting this, as when i drank fizzy drinks it would have an odd sensation. I also started to get ice cold feelings in my throat, which i presumed was the nerves. I also started to cough alot on some foods, it was almost like my throat was irritated.

I went abroad for 2 weeks and my throat was so irritated by something i could not stop coughing. Then on the last day, i seemed to have trouble with swallowing. I could swallow, but it felt like something was stuck in my chest and back and throat, it sounds strange but it was relieved by burping! but as soon as i swallowed again, the feeling of an airbubble trapped was there,ts constant. Its not painful but very uncomfortable. As my nerve dysfunction problem seemed to effect my throat in 2015 and has done since, i presumed the swallowing thing is connected somehow. I am wondering if this is connected to autonomic neuropathy? I seem to these days struggle with this more with rapid heart beat, constipation , sweating..etc. Everytime i google swallowing issues, its seems to say ALS is the main cause! Its really terrifying me, even when i went to see my gp, he didn't reassure me about ALS. I wouldn't have thought ALS would present like this? Feeling very anxious so would like your thoughts please? Thanks Loulou

I would stay calm about ALS, if you have had several tests I am ssusming you have had an electromiography that will discard ALS, as well the first symptom is weakness, not sensory symptoms

Try cbd oil, have heard works for SFN

Have you thought about BFS?

P.S, yep ALS is obivious weakness.

hey lou-

have the same throat sensations you do.. was diagnosed with SFN (even though I had a negative skin biopsy) and told that SFN patients can experience overlapping autonomic neuropathies.. throat sx may be due to those autonomic neuropathies.. don't know for sure.. but had one neurologist suggest this.

Lou - I forgot to mention that I had another Gastro specialist attribute the throat sensations to GERD (which he says I have after discovering a hiatal hernia following a endoscopy).. i don't know which doctor is right.. the neurologist i spoke to simply told me "it could be" due to some autonomic neuropathy but didn't seem to know definitively and simply prescribed gabapentin (which provides minimal releif to by other SFN issues- but does not address the strange throat feeling). Have you had any imaging/ swallowing tests done?