1. < Neuropathy

Unknown Cause or Idiopathic SFN

Posted by katec @katec, Nov 5, 2019

Hello. I was wondering if there were any folks out there who were at one point labeled “idiopathic” or “unknown cause” SFN, BUT later found the cause?

I’m asking because my son (15 years old) has a positive biopsy for SFN. We have done every blood test imaginable and thorough genetic testing to try and pinpoint what is causing his SFN so we can guide treatment. So far, nothing shows up out of the ordinary on any test. His B12 is high, which is weird since he is homozygous for MTHFR, but other than that everything comes back normal on blood tests and his genetic testing shows no known mutations.

His doctors have tried many medications and he doesn’t respond to those in either a negative or positive way. The doctors are pretty stumped, so I was wondering if anyone else has had a similar situation and finally did find something (maybe outside the box of normal testing) that they think is causing the SFN and were better able to treat it? Ideally we’d like it to be autoimmune, so we could start IVIG or another type of immunotherapy (even though he didn’t respond to a 30 day high dose of prednisone) but nothing in his bloodwork is pointing in that direction.

Thanks so much!

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Moderator
Lisa Lucier, Moderator | @lisalucier | Nov 16, 2019
In reply to @grahamb "Has anyone experienced fevers daily? Have you been diagnosed with Fever of unknown origin? I realize..." + (show)
@grahamb

Has anyone experienced fevers daily? Have you been diagnosed with Fever of unknown origin? I realize this discussion has nothing to do with my issues but I wanted to ask. What is a good medicine to take for diabetic neuropathy?

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Hi, @grahamb - how long have you had diabetic neuropathy? Have you taken any medications to date for it?

I'd like you to meet @manassen1 @johnbishop. @blocker @jeffrapp @harper7745 also may have some thoughts for you on medications for this condition.

Has your doctor indicated that the fevers you are experiencing have a tie-in to the neuropathy?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 16, 2019
In reply to @grahamb "Has anyone experienced fevers daily? Have you been diagnosed with Fever of unknown origin? I realize..." + (show)
@grahamb

Has anyone experienced fevers daily? Have you been diagnosed with Fever of unknown origin? I realize this discussion has nothing to do with my issues but I wanted to ask. What is a good medicine to take for diabetic neuropathy?

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Hello @grahamb, I would like to add my welcome to Connect along with @lisalucier and other members. Mayo Clinic has some good information on the different treatments/medications for pain relief for diabetic neuropathy as well as some lifestyle and home remedies information here: https://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/diagnosis-treatment/drc-20371587

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grahamb | @grahamb | Nov 16, 2019
In reply to @lisalucier "Hi, @grahamb - how long have you had diabetic neuropathy? Have you taken any medications to..." + (show)
@lisalucier

Hi, @grahamb - how long have you had diabetic neuropathy? Have you taken any medications to date for it?

I'd like you to meet @manassen1 @johnbishop. @blocker @jeffrapp @harper7745 also may have some thoughts for you on medications for this condition.

Has your doctor indicated that the fevers you are experiencing have a tie-in to the neuropathy?

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About 5 yrs I've had neuropathy. No I have not taken any meds for it trying to do research to find something that will help. No doctor can figure out the fevers low grade 99.2-99.9 and some nights I can have a fever as much as 101 ???? I have psoriatic arthritis but my rheumatologist says it's not causing the fevers.. This has been going on since Feb 2015

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albiet | @albiet | Nov 16, 2019
In reply to @artscaping "Good afternoon @albiet, Thanks for your sensitivity about my time. I didn't see any more posts..." + (show)
@artscaping

Good afternoon @albiet, Thanks for your sensitivity about my time. I didn't see any more posts from you about this subject, so I will share my experience and let you know what dosages and products I now find very helpful.

My experience tells me that for the medical cannabis user there are really only 2 and possibly 3 products that seem to fit the bill. They do not include, edibles, beverages or flower.

My morning begins with a 2:1 CBD/THC tincture. Start with 1/2 dropper and increase as recommended. Make sure you have something in your tummy and this product will be your best product for pain control. If you use the method of holding the tincture under your tongue you may or may not feel effects in 15 minutes or so. If you swallow the tincture it has to go through your digestive system and takes 45-60 minutes. Make sure you purchase it from a legal, authorized dispensary. Legalization increases the opportunity to regulate the growing and harvesting of the plants. (A hot as you can stand it shower is also at the beginning of my day.)

My morning also includes a 3:1 CBD/THC balm on my hands, wrists and lower arms. I have been using this product for several years. It shuts off the tingles and needles for 1-2 hrs. Better than the 15-20 minutes for lidocaine compounded creams. I probably use this product 3 times a day......with the last application at bedtime.

Midday.....I up the dosage for a 1:1 CBD/THC tincture. Start using the 1:1 with just 1/4 dropper and work up.
Bedtime....another 2:1 tincture.

How has this worked? It is my anchor to the world as I know it. I have learned to keep the pain under control, by being more aware of my physical condition and then making adjustments in the cannabis dosage.

Let me know what follow up you still need. When do you see your physician? Have health and wellbeing. Chris

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@artscaping thank you so much for your detailed schedule and info on medical marijuana. I’m sorry I haven’t responded earlier but just saw the replies. I did start a new thread on cbd and need to go there also to see if anyone has posted. I went to the neuro that specializes in SFN and pn. He wants me on lyrica but I’m holding off as long as possible. I upped my imipramine to 200 mg 2 days ago. I was at this and also 30 mg cymbalta earlier in the year but had to cut back as I was getting tremors. Going back to 200mg imipramine has helped me sleep at least 5-6 hours the last 2 days. I’m feeling slightly better but know it’s short lived. I still don’t know why tinnitus has started this year and increased steadily. I was told also that my back has 3 really bad herniations - 1 cervical and 2 thoracic and should see a neurosurgeon . Said don’t think I need surgery right now but should see him now so you know who to go to as it will one day become a problem. Have to get signed up medical marijuana to try

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Nov 17, 2019

@albiet, Good evening. Thanks for your response. I wanted to show how you can totally "manage" the SFN pain during the day with a natural medicine without side effects, that simply relieves symptom pain.

We know that at this point there is no cure for SFN, so we are not trying to treat anything.... just mask the pain so that we have the best quality of life possible.

When I read your current list of medications, it is overwhelming. And even with medical cannabis, you may still need to address the anxiety and depression that most of us try to conquer. I take Cymbalta in the morning to help my anxiety enhanced recent memory issues. It has made a huge difference in how I approach my day......sort of "Que sera, sera." Sleep peacefully, Chris

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Nov 17, 2019
In reply to @artscaping "@albiet, Good evening. Thanks for your response. I wanted to show how you can totally "manage"..." + (show)
@artscaping

@albiet, Good evening. Thanks for your response. I wanted to show how you can totally "manage" the SFN pain during the day with a natural medicine without side effects, that simply relieves symptom pain.

We know that at this point there is no cure for SFN, so we are not trying to treat anything.... just mask the pain so that we have the best quality of life possible.

When I read your current list of medications, it is overwhelming. And even with medical cannabis, you may still need to address the anxiety and depression that most of us try to conquer. I take Cymbalta in the morning to help my anxiety enhanced recent memory issues. It has made a huge difference in how I approach my day......sort of "Que sera, sera." Sleep peacefully, Chris

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Hello...I'm feeling good about my recent choice to stop lidocaine infusions. I have been approved for Medical marijuana and will be visiting a dispensery tomorrow. Hoping it provides the masking of pain and discomfort I need and will allow for discontinuation of hydrocodone...2 years coming. Thank you Chris for your positive encouragement since I've joined connect. You and many others have been a big help in my discoveries of how to live better with SFN. Fingers are crossed for a better tomorrow.
Rachel

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2 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Nov 17, 2019
In reply to @rwinney "Hello...I'm feeling good about my recent choice to stop lidocaine infusions. I have been approved for..." + (show)
@rwinney

Hello...I'm feeling good about my recent choice to stop lidocaine infusions. I have been approved for Medical marijuana and will be visiting a dispensery tomorrow. Hoping it provides the masking of pain and discomfort I need and will allow for discontinuation of hydrocodone...2 years coming. Thank you Chris for your positive encouragement since I've joined connect. You and many others have been a big help in my discoveries of how to live better with SFN. Fingers are crossed for a better tomorrow.
Rachel

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@rwinney, @artscaping, Great news. I am excited to learn about your visit to the dispensary. I am here for you. Be safe and protected. Chris

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Nov 17, 2019
In reply to @artscaping "@rwinney, @artscaping, Great news. I am excited to learn about your visit to the dispensary. I..." + (show)
@artscaping

@rwinney, @artscaping, Great news. I am excited to learn about your visit to the dispensary. I am here for you. Be safe and protected. Chris

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👍🏼

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Mentor
Rachel, Volunteer Mentor | @rwinney | Nov 17, 2019
In reply to @rwinney "👍🏼" + (show)
@rwinney

👍🏼

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Found this on the dispensaries website and I find both very helpful in general as an overview and comparison. A little tough to read, sorry.
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2 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Nov 17, 2019
In reply to @rwinney "Found this on the dispensaries website and I find both very helpful in general as an..." + (show)
@rwinney

Found this on the dispensaries website and I find both very helpful in general as an overview and comparison. A little tough to read, sorry.

Jump to this post

@rwinney, those are helpful. I would be very hesitant about extra strength dosages. I don’t think the pain from SFN requires those levels. The times seem pretty accurate. Oral mucosal is my preferred distribution method. Find joy today. Chris

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