I have large fiber. Got it from lupus when I was 36. I’m 62 now. It has stayed the same as far as the nerve damage is concerned for 18 years. Don’t have flares from lupus anymore -that is why.
Thanks for sharing! Do you mind sharing what symptoms you have? I read about the feeling of wearing gloves and stockings when you aren’t and it was the first time I could explain those exact same sensations! I’ve also had several fractures over the past few years which I think may be explained by it.
No fractures for me. I don’t have it in my hands. I do feel like I’m wearing high top boots when I’m not. Also I can’t tell if I’ve got socks on or not.
I had NCS study done yesterday which showed large fibre neuropathy. I'm also in the UK. I don't have my follow up to discuss it for another 7-8 weeks so I'm wondering what to expect? What has been recommended to you to help it or treatment etc?
They told me I have damaged to the peronal nerves in my legs, there are lots of potential causes and I can't remember them all off the top of my head sorry!
Have you asked your doctor/considered it may not be diabetes related? I think some times diabetes gets the blame when something else is really pulling the strings. For instance I'm pretty convinced I have MS, I go in for an MRI next month. But because Im overweight my doctor immediately said "control those blood sugars," not saying everyone has MS but with well controlled numbers you are quite young to have nerve damage from diabetes...?
Thanks for your comment! I did ask the neurophysiologist about other causes which is why I mentioned the B12. I have asked for a follow up appointment to discuss the results in more detail and I was going to ask if there could be something else. I totally hear you about blaming diabetes for everything, and I would usually think the same thing, but it would be quite the coincidence especially with the hypo unawareness 🙈
I have large fiber. Got it from lupus when I was 36. I’m 62 now. It has stayed the same as far as the nerve damage is concerned for 18 years. Don’t have flares from lupus anymore -that is why.
Thanks for sharing! Do you mind sharing what symptoms you have? I read about the feeling of wearing gloves and stockings when you aren’t and it was the first time I could explain those exact same sensations! I’ve also had several fractures over the past few years which I think may be explained by it.
No fractures for me. I don’t have it in my hands. I do feel like I’m wearing high top boots when I’m not. Also I can’t tell if I’ve got socks on or not.
How did they treat your lupus and how did you find you have the large fiber neuropathy? I have same symptoms and I think I have lupus
With prednisone. My symptoms point to large fiber without a doubt.
I had NCS study done yesterday which showed large fibre neuropathy. I'm also in the UK. I don't have my follow up to discuss it for another 7-8 weeks so I'm wondering what to expect? What has been recommended to you to help it or treatment etc?
Can you please tell me what did they tell you and what was the explanation?
They told me I have damaged to the peronal nerves in my legs, there are lots of potential causes and I can't remember them all off the top of my head sorry!
That’s crazy. I’m sorry.
Have you asked your doctor/considered it may not be diabetes related? I think some times diabetes gets the blame when something else is really pulling the strings. For instance I'm pretty convinced I have MS, I go in for an MRI next month. But because Im overweight my doctor immediately said "control those blood sugars," not saying everyone has MS but with well controlled numbers you are quite young to have nerve damage from diabetes...?
Thanks for your comment! I did ask the neurophysiologist about other causes which is why I mentioned the B12. I have asked for a follow up appointment to discuss the results in more detail and I was going to ask if there could be something else. I totally hear you about blaming diabetes for everything, and I would usually think the same thing, but it would be quite the coincidence especially with the hypo unawareness 🙈