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Acute small fiber neuropathy

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Old 02-14-2016, 09:18 PM   #11
madisongrrl
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Originally Posted by Marie33 View Post
Madisongrl you use the word heal. Is your sfn better? Do you feel like you have healed?
I've been getting better every day. My burning has greatly reduced in all areas of my body.

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Originally Posted by Marie33 View Post
I see you take "low does Naltrexone", does/did this help you with your pain. Should I ask my Neuro about this medication? Maybe it can help Mickey with his symptoms?
LDN has seemed to helped with the pain, along with the antibiotics. I take 2.5mg of LDN each night before bed. This might be a good drug for you to try, especially if there is a suspected immune/autoimmune component to your SFN.

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Have you ever tried taking Prednesone and has it helped you? My sfn is still "Idiopathic" even tho the latest blood-work, after 5 years is leaning towards some autoimmune deficiency/disorder or disease. I don't know anymore. I'm also scared and confused about my future. This "disease" has taken over my life. Is there anything you can offer to help "us".. Ty
I've never taken steroids; they are contraindicated with Lyme disease.
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Old 02-15-2016, 08:15 PM   #12
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[QUOTE=madisongrrl;1199257]I've been getting better every day. My burning has greatly reduced in all areas of my body.


LDN has seemed to helped with the pain, along with the antibiotics. I take 2.5mg of LDN each night before bed. This might be a good drug for you to try, especially if there is a suspected immune/autoimmune component to your SFN.


I've never taken steroids; they are contraindicated with Lyme disease.

Madisongrrl, Thank you for responding. I will talk to my Neuro this coming Thurs about the LDN. If I understanding you correctly, Lymes is the cause of your sfn? What did you take that reduced your burning?
And does Nortriptyline help your pain. Do you get any SE's with it. I tried Amitriptyline but it caused skipped heart beats. Plus my BP is normal to low, and Doc said it would probably lower it more. I would love trying it after reading what MrsD wrote, that it could have some "nerve healing" affects.
Could that be why your getting better?
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Old 02-15-2016, 09:30 PM   #13
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Madisongrrl, Thank you for responding. I will talk to my Neuro this coming Thurs about the LDN. If I understanding you correctly, Lymes is the cause of your sfn? What did you take that reduced your burning?
Yes, Lyme disease is the cause of my neuropathy (large and small fiber). LDN and antibiotics reduced the burning. I can wear shoes now without pain.

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And does Nortriptyline help your pain. Do you get any SE's with it. I tried Amitriptyline but it caused skipped heart beats. Plus my BP is normal to low, and Doc said it would probably lower it more. I would love trying it after reading what MrsD wrote, that it could have some "healing" affects.
Could that be why your getting better?
Nortriptyline helps with my facial pain. I have nerve pain that runs from the left side of my throat all they way to my eye. If I cared enough to follow up with my neuro, I would suppose that it would be classified as atypical face pain. Nortriptline does help with that. I've run out of it before and also tried to quit it....but I can't because my face starts hurting to the point where I can't function. I had a reduction in burning withing 2 weeks of starting LDN and antibiotics; so this is really what has made the biggest improvement in the quality of my life.
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Old 02-17-2016, 12:19 PM   #14
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I dont see the neurologist for another 3 weeks. i have some decent days and some bad. It really is hard to ignore the symptoms. Any tips on that? Im scared to try anything that would affect me during work. Although thinking about my issues 24/7 probably isnt helping. given the sensory nature of this whole thing, any little twinge bothers me now. it may be normal or abnormal but now im aware of every little thing. thats bad. what oral supplements are useful. im taking a bunch but its hard to tell if anything works!
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Old 02-18-2016, 08:28 PM   #15
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Originally Posted by madisongrrl View Post
Yes, Lyme disease is the cause of my neuropathy (large and small fiber). LDN and antibiotics reduced the burning. I can wear shoes now without pain.



Nortriptyline helps with my facial pain. I have nerve pain that runs from the left side of my throat all they way to my eye. If I cared enough to follow up with my neuro, I would suppose that it would be classified as atypical face pain. Nortriptline does help with that. I've run out of it before and also tried to quit it....but I can't because my face starts hurting to the point where I can't function. I had a reduction in burning withing 2 weeks of starting LDN and antibiotics; so this is really what has made the biggest improvement in the quality of my life.
Hi Madisongrrl,
I went to my Doc appt today. Asked the neurologist about Low Dose Naltrexone for my pain and burning. He laughed and said "that stuff doesn't work for your kind of pain". I told him I talked to a few people on this site that use it and have gotten some relief. He said he hardly prescribes it and wouldn't prescribe it for me! I was so mad...I will ask my PM Doc on Monday what he thinks. Wanted to share this with you and others that use this med.
I'm reallly getting tired of this pain and these damn doctors!!
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Old 02-18-2016, 08:41 PM   #16
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[QUOTE=Marie33;1199448]
Quote:
Originally Posted by madisongrrl View Post
I've been getting better every day. My burning has greatly reduced in all areas of my body.


LDN has seemed to helped with the pain, along with the antibiotics. I take 2.5mg of LDN each night before bed. This might be a good drug for you to try, especially if there is a suspected immune/autoimmune component to your SFN.


I've never taken steroids; they are contraindicated with Lyme disease.

Madisongrrl, Thank you for responding. I will talk to my Neuro this coming Thurs about the LDN. If I understanding you correctly, Lymes is the cause of your sfn? What did you take that reduced your burning?
And does Nortriptyline help your pain. Do you get any SE's with it. I tried Amitriptyline but it caused skipped heart beats. Plus my BP is normal to low, and Doc said it would probably lower it more. I would love trying it after reading what MrsD wrote, that it could have some "nerve healing" affects.
Could that be why your getting better?

Hi Mgrrl,
I wrote to you in another post too. I just wanted to ask you why you thought LDN might be good for me? Today I found out that my SFN may be autoimmune mediated. Neurologist says my Serology report (bloodtests) showed my Carbonic Anhydrase is elevated. So this means I have an Inflammatory autoimmune disease. ( I have no idea what that means). He gave me Medrol Dosepak (Prednesone) to try for a few days. I asked about LDN for my pain and he said he doesnt use it. What are your thoughts. Should I just ask my Pain Management Doctor on Monday?
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Old 02-19-2016, 09:23 PM   #17
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Originally Posted by Marie33 View Post
Hi Madisongrrl,
I went to my Doc appt today. Asked the neurologist about Low Dose Naltrexone for my pain and burning. He laughed and said "that stuff doesn't work for your kind of pain". I told him I talked to a few people on this site that use it and have gotten some relief. He said he hardly prescribes it and wouldn't prescribe it for me! I was so mad...I will ask my PM Doc on Monday what he thinks. Wanted to share this with you and others that use this med.
I'm reallly getting tired of this pain and these damn doctors!!
Your neurologist is a jerk. Pradeep Chopra is a well known pain managment doctor who has success treating CRPS patients with LDN and gabapentin. I can tell you that on other LDN message boards, it does take the edge off neuropathic pain for some.

Will it revolutionize your life and cure your pain? Probably not. Might it take the edge off your pain and give you more quality of life? Maybe! It cheap and it has such a low side effect profile that it surely can't hurt to try it out for 6 months.
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Last edited by madisongrrl; 02-19-2016 at 11:06 PM.
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Old 02-19-2016, 09:28 PM   #18
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Hi Mgrrl,
I wrote to you in another post too. I just wanted to ask you why you thought LDN might be good for me? Today I found out that my SFN may be autoimmune mediated. Neurologist says my Serology report (bloodtests) showed my Carbonic Anhydrase is elevated. So this means I have an Inflammatory autoimmune disease. ( I have no idea what that means). He gave me Medrol Dosepak (Prednesone) to try for a few days. I asked about LDN for my pain and he said he doesnt use it. What are your thoughts. Should I just ask my Pain Management Doctor on Monday?
LDN helps your immune system function better - it's one of the ways the drug works. So the fact that they suspect that your neuropathy might have an immune/autoimmune cause, well then it I think it is reasonable to try something that might help your immune system work. Hopefully your pain doctor knows about LDN and will write you a script.

Also, are you supplementing with Vitamin D? Did you have your levels tested?
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Old 02-19-2016, 11:18 PM   #19
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Hi Mickey, I can totally relate and feel your pain. I had a virus January 2015 and 2 huge holes formed in the roof of my mouth that were infected and filled with pus. The ear, nose, throat doctor never gave an exact diagnosis of what it was but coxsackie and herpengina were mentioned and biopsy was negative for cancer.

Then February I got first symptoms of "neuropathy". Also, an important factor, I am Type 1 diabetic. I was originally diagnosed Type 2 about 6 years ago and then after losing about 40-50 pounds, doctor ran a C-peptide test and found out I am Type 1 in April 2015 and went on insulin pump and sensor. However, like I said, had some kind of virus in January and the neuropathy started in February and progressed very quickly to SEVERE pain in feet and legs.

Also experience what I describe as electric shock randomly all over my body. Then in May, started having jaw pain on left side when I eat. Now, the doctors I was seeing, primary, neurologist all said "Oh it's just diabetic neuropathy". But I believe it's some other type of neuropathy (like what you and others are describing). Finally just went to a new neurologist and he agrees (Thank God).

I just had a left lumbar sympathetic nerve block yesterday and I feel some relief but not what I had hoped. I have been taking for a while 3600 mg/day of Gabapentin and a pain medicine and just started on Oxstellar 1200 mg/day about 1 week ago. I tried Lyrica, nortryptaline, Fetzima, etc. but either had nasty side effects (Lyrica) or no relief. I think the virus triggered something and somehow it's all related.
What exactly is acute small fiber neuropathy? My new neurologist mentioned something like that but also said it could be an auto-immune neuropathy. I'm in my mid 40's and have a family and I'm looking for any kind of answers cause living like this is horrible and a struggle to make it through each day!!!
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Old 02-20-2016, 11:45 AM   #20
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Antibodies to your infection attack your own small nerve fibers bc the proteins are similar. Autoimmune thing but hard to prove. Kinda like gbs. Im going to a dedicated pn center. They said should be monophasic and improve with time... Months. The should and months are not very comforting.

During the day i walk around with crocs or no shoes which is ridiculous but what can i do. Night time stuff if it keeps me up is the worst. No cure just symptomatic treatment. They seem to reserve immunotherapy for people with motor neuropathies... Weakness. Very little written about acute small fiber neuropathies. Only small case reports
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