Young adult with idiopathic sensory axonal neuropathy

Posted by leifg @leifg, Mar 2, 2019

Hello all, first time poster here. I'm hoping by reaching out and telling my story I might connect with others who may be going through the same or similar experiences.

In 2015 at age 33 I was diagnosed with idiopathic sensory axonal neuropathy.

My first obvious and bothersome symptoms began in Jan 2014. I noticed numbness in one toe, the soles of my feet were burning when walking about, I had mild coordination loss in my right foot, and aching pain in my right calf. When these symptoms didn't go away after a day or two I began worrying. And when they didn't go away after a couple weeks I began panicking. The worst thoughts ran through my head.

The year preceding all this, 2013, I was in the best shape of my life. Athletic. Eating well. Resting well. I was playing tennis every week. Practicing yoga regularly. Rock climbing several times a month. Going on hikes on the weekends. The only difficulties I had were a long period of stress at work and stress at home because we had a young toddler.

When these symptoms suddenly started in Jan 2014 I approached my family doctor, but I felt I wasn't taken very seriously. I was referred to a psychologist to treat my "anxiety". Sure I had anxiety, I was scared to death and no one was helping. I made multiple visits back explaining my symptoms, but I was getting no where. After spinning my wheels for a year and a half I switched doctors in Aug 2015. This new doctor took me seriously. I got an MRI (brain and neck), it was normal. I was then referred to a neurologist where I had a nerve conduction test. I was immediately diagnosed with idiopathic sensory axonal neuropathy. The sensory nerves in my legs had amplitude scores that were well below normal. A "normal" score is amplitude 10 or higher, my left leg was a 6 and my right leg was 5.

On one hand I was terrified when I got diagnosis. But on the other hand I wasn't surprised and I was thrilled to have confirmation that I wasn't crazy.

Since my diagnosis in Aug 2015, I've read countless material, videos, and studies on neuropathy. I'm a scientist and I love researching things to death. It's very frustrating because I don't fall into the common causes (diabetes, alcohol, HIV, Lyme, etc) and I'm outside the typical age range (which seems to be 55+) so most material on neuropathy hasn't been very helpful. The only thing I haven't fully ruled out is genetic screening, but no one in my family has obvious symptoms so it may turn up nothing. Despite that it's next on my to-do list

So that's my story! If anyone has any comments, questions or suggestions I'd be happy to answer!

@leifg, Welcome. What a story. Thanks for sharing with us. You will find that your journey just may parallel someone else’s. Or as we learn more about you, there may be some who can shed some light on your efforts to continue to have a good life and can offer substantial support from others walking along the same path. We can also learn from you. What, for example, are your current treatments and other efforts that provide relief? What have you wondered about? You can ask in this forum and get responses that are genuine and supportive. Just remember to always be your own advocate. May you be free of suffering and have a peaceful sleep tonight. Chris

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Hello @leifg, I would like to add my welcome to Mayo Clinic Connect along with @artscaping and other members. I'm tagging our Director @colleenyoung to see if we should move your discussion to another discussion for more visibility and where members who have been recently diagnosed with different forms of neuropathy are sharing their symptoms and diagnosis. While we wait you may want to read through the discussion and meet other members with similar symptoms.

Groups > Neuropathy > Just diagnosed….continue testing for causes
https://connect.mayoclinic.org/discussion/just-diagnosed-continue-testing-for-causes/

I have idiopathic small fiber peripheral neuropathy and like you love to do my own research to find out about any new treatments that may help with my condition. One of my favorite tools is Google Scholar (https://scholar.google.com/) which I like because it finds a lot of medical research around the globe and you can sort it by years. I don't have pain with my neuropathy just the numbness and some tingling so I put my diagnosis off for 20+ years. I'm really happy to see you are advocating for your health and seeking answers. I found an article on the National Institutes of Health site that was interesting but I'm not sure how helpful it is.

Autonomic Nervous System Involvement in the Giant Axonal Neuropathy (GAN) KO Mouse: Implications for Human Disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5057391/

Have you found any treatments that help with your symptoms?

John

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Hello and thank you for the welcome @artscaping and @johnbishop !

As for treatments, my neurologist initially prescribed me Gabapentin for the pain. Maybe I'm foolish, but I never took it. Even with the burning feet and calf pain I still prefer to listen to my body and rest when I need to.

I have tried a number of alternative medicine/treatments. I saw a naturopath for over a year. Over the course of a year I tried acupuncture, B12 injections, physio (TENS), massage, bio-feedback/meditation, gluten free diet, dairy free diet. We also experimented with a many natural medicines related to nerve pain relief and nerve health; Alpha Lipoic Acid, Neurapas, Hericium, and Cordyceps. Unfortunately none of the treatments made any noticeable improvement, short or long term. That was disappointing.

The simplest trick I have for finding relief is simply taking off my shoes and sitting down. Once I've taken these steps I feel almost symptom free. Being on my feet, especially in any kind of foot-wear (other than slippers or rubber boots!) is very uncomfortable and painful, not to mention the sense of coordination loss in my feet when walking about. I'm pretty stubborn though and haven't given up the physical activities I engaged in prior. Yes it's much more difficult, and yes I don't do them as often or with same intensity. I'll be honest, most days it's incredibly hard to be motivated, but the adrenaline rush afterwards helps so much with the pain and my mood.

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I have wondered if CDB Oil would be helpful.

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@leifg, Good morning. Wow…you have been receptive to may options. I was not excited about Gabapentin at first either. I requested a modification in the dosage and now just take 900 at night. That helps through the night and even some morning time that I reserve for Yoga and meditation. I have chosen to control daytime pain with medical cannabis…..3-4 tincture droppers a day of a CBD/THC combination plus a CBD/THC topical for tingling and needle-like pain. I am now on year 3 of this journey into alternative or integrated medicine. It does take time. If you want to read more of that journey, it is all on my profile posts https://connect.mayoclinic.org/member/114723aa004d87226c3c935ba2dd29e2cf2308dc21/. I will try to answer any questions you might have….there are now test results and recommendations for dosages if you are interested. Be safe and protected today……and find a way to have happiness. Chris

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Hi all, hope everyone is doing OK! Im 53 year old male. I had a perforated colon and ended up in the emergency room about four years ago from then on my feet were killing me. I have been diagnosed with idiopathic peripheral neuropathy about two years ago. Things have steadily been going downhill since then to the point I can’t work or hardly walk distances of any kind. I had the pins and needles in the feet with severe foot pain mostly all the time. I started using a cream Called Relievz at night and the pins and needles went away after about a month of using it. I recently had another nerve conduction test that came back negative for neuropathy but I still had major foot pain and recently been diagnosed with a bulging disk. L5/S1 I went to physical therapy and it seems to make things worse. I tried the Teeter hang up and that made things worse. Just wearing a sock hurts let alone a shoe. Walking has become extremely painful. I ordered a pair of neuropathy socks on Amazon which seem to help quite a bit. Feet still hurt but it least stay warm because the feet seem to always be cold. I’m taking pain pills and gabapentin witch helps for about maybe 2 hours. A recent blood test came back positive for an antibody called Nueronal ACHR ganglion. My neurologist says it’s probably nothing but has ordered an MRI of my lungs and torso to rule things out. I’m a little concerned but what can you do. I’m hoping the nurapathy cream and the socks idea helps someone else as it did for me. I’m going to try the CBD oil next. Running out of options and the pain is getting worse. Best of luck to everyone!

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Hello @trouble1965, I see that you are a first time poster so I would like to welcome you to Mayo Clinic Connect and thank you for posting. I also have idiopathic small fiber peripheral neuropathy. Like you my feet always seem to be cold. I wear compression socks since I also have lymphedema in my legs but it's a blessing when I can take them off at night. I posted what has helped me some in an earlier post here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

There is another discussion here on Connect that may be helpful on myofascial release therapy.

Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Did your doctor or neurologist prescribe any medications for you for the neuropathy pain?

Liked by Lisa Lucier

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@johnbishop

Hello @trouble1965, I see that you are a first time poster so I would like to welcome you to Mayo Clinic Connect and thank you for posting. I also have idiopathic small fiber peripheral neuropathy. Like you my feet always seem to be cold. I wear compression socks since I also have lymphedema in my legs but it's a blessing when I can take them off at night. I posted what has helped me some in an earlier post here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

There is another discussion here on Connect that may be helpful on myofascial release therapy.

Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Did your doctor or neurologist prescribe any medications for you for the neuropathy pain?

Jump to this post

Hey John , thanks for the welcome and the links. I joined the Facebook group and hopefully I can get some advice and ideas rather than swallowing pills all day. The MFR therapy sounds interesting as well. The doctors have me on pain pills and Gabapentin. Seems to help some. I don’t wear compression socks rather the looser the better for me.

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