Axonal Sensorimotor Polyneuropathy: Looking for someone to relate

Posted by Laura @laurask, Mon, Mar 16 6:18pm

I apologize in advance for any grammatical mistakes. Dictation isn’t always my friend. Hello! Just stumbled upon this website and hope to find someone like me. My name is Laura: 26 years old and live in North Carolina. Eight months ago, I began to lose feeling in my toes, feet, leg above the knee, and from my elbow down. I was admitted to the hospital for over one month, as well as appointments at top rated institutions. My current diagnosis is systemic symmetric sensorimotor subacute axonal polyneuropathy. I experience extreme soreness as if I ran a marathon. My life is playing the violin and I am no longer able to do that. I’ve never been heartbroken like this before. Hoping to find someone who understands and relates.

@laurask Im so sorry to hear that what a bummer . Welcome to connect we are a caring group and there are a lot of people on here that can help with a lot of different problems. Im sure you will get some responses . Is there anything the Dr.s are doing for you to make your pain more bearable. Neuropathy is a problem for sure . I for one have the burning pain in my thighs from compression in the back . I do take gabapentin for it Dr. prescribed . Is there another craft or hobby you like to do or find something in the art world We have some people on here that do Zantangle sp?work with fabric in afghan of crocheting. I hope @ginger can help you she is a good information for ideas.

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@lioness

@laurask Im so sorry to hear that what a bummer . Welcome to connect we are a caring group and there are a lot of people on here that can help with a lot of different problems. Im sure you will get some responses . Is there anything the Dr.s are doing for you to make your pain more bearable. Neuropathy is a problem for sure . I for one have the burning pain in my thighs from compression in the back . I do take gabapentin for it Dr. prescribed . Is there another craft or hobby you like to do or find something in the art world We have some people on here that do Zantangle sp?work with fabric in afghan of crocheting. I hope @ginger can help you she is a good information for ideas.

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I can’t thank you enough for responding. I’m so sorry about your pain. How long have you been experiencing this? Gabapentin is my best friend and I take oxycodone three times a day. I take a few other medications that are helping alleviate nerve pain. The numbness I experience is by far the worst symptom. I’m doing large puzzles and have a whole art station set up so I can color and draw. I am always open to new ideas. Productivity is essential, I believe. What are your favorite hobbies?

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@laurask Let me add my welcome to Mayo Connect, also. We are patients/caregivers/family members sharing our experiences and strength with others. There is a wide group of people here!
Here is a link to the neuropathy group discussions which may offer you some insight and information.
https://connect.mayoclinic.org/group/neuropathy/
I also know @johnbishop and @artscaping may have some tips for you.

Not being able to participate in an activity that fills your heart must be so difficult, especially at such a young age! What have the doctors determined is the root cause for this disorder?

Sometimes distracting yourself from the discomfort and pain can be helpful. What activities can you think of that might tweak your interest? Yoga, crafts of any sort, walking, writing in some form, etc? I practice Zentangle, plus crochet and walking, to rally against the discomfort of fibromyalgia, chronic kidney disease, and some other things. Will you come back and let us know how we can help you today?
Ginger

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@laurask

I can’t thank you enough for responding. I’m so sorry about your pain. How long have you been experiencing this? Gabapentin is my best friend and I take oxycodone three times a day. I take a few other medications that are helping alleviate nerve pain. The numbness I experience is by far the worst symptom. I’m doing large puzzles and have a whole art station set up so I can color and draw. I am always open to new ideas. Productivity is essential, I believe. What are your favorite hobbies?

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@laurask I'm glad to hear you have somethings to keep you busy. I live in a senior building and started chair exercises 45 min 2x a week and we do adult coloring I also paint and want to get into water colors but with this cronovirus nobody is going anywhere. I also sing ,love music that soothes the soul.Singing in choir all my life I open my window and sing hymns or other songs We can always think of something to keep us entertaind Please come back and talk with us Our community covers a range of topics

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Hello @laurask, I would like to add my welcome to Mayo Clinic Connect along with @gingerw, @artscaping, @lioness and other members. One thing I know is that you are not alone. A lot of members have the same feeling until they read similar stories of other members here on Connect. I can relate to the numbness in the ankle, feet and toes. My small fiber PN has been with me a long time but I am one of the fortunate ones with only the numbness and no associated pain. I do take specific supplements to help my symptoms and they are helping. I shared my story of what helps me earlier on Connect here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
@rwinney and @jimhd may also have some suggestions for you.

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Good evening, @laurask . Welcome and thank you for being able to spell that very long diagnosis. At only 26, it must feel like the activities and interests you pursued and enjoyed have been snatched away from you. Are you seeking more answers for alleviating pain and mobility conditions caused by the "nerve pain"?

During your month in the hospital, were you visited by medical practitioners who could help you understand what your symptoms might respond to in the way of treatments and/or medications? What has been most beneficial so far along this journey that we are now sharing? As you visited top-rated institutions, what changes in your regimen were suggested?

Was a form of treatment called MFR, Myofascial Release Therapy, mentioned? This is the one treatment that keeps me looking for joy every day. Here is the MFR discussion on Connect:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
And this is the site on the internet.
https://myofascialrelease.com/
Are you involved in any cognitive-behavioral therapy at this point?

My life does relate to yours in terms of facing the challenges of daily living. I just have been at it longer. I am 78.

Hoping to learn more about you and very interested in finding areas for sharing.
May you be free of suffering and the causes of suffering.
Chris

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@laurask
SSSSAP – that's a mouthful. I have idiopathic small fiber polyneuropathy that started with tingling and numbness in my feet and legs below my knees. After a time the burning pain began in the balls and heels of both feet, and now is in the whole feet and ankles. By the end of 1916, the pain had become unbearable, so I had a spinal cord stimulator implant in June of 2017. That gave me 75% pain reduction that continued for a year. After that, I have had to have the stimulator amplifiers adjusted every three months. I guess it's still giving me some relief. It's hard to know sometimes, what with the meds I take – which one is treating the pain and which ones aren't.

I also have autonomic neuropathy, and none of the doctors will say if it's the cause of several other things that are going on in this aging body of mine. Double vision, esophageal dysmotility, etc. Neuropathy is no laughing matter, is it. Have you found anything that eases the pain? Medications and non-medication? My prayers and best wishes from here to you.

Jim

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Hey Laura @laurask, I'm Rachel and am very glad you found us here on Connect! I definitely know you will benefit by partaking and learning from others here, I certainly do.

You speak my language with your diagnosis and struggles, I'm so sorry for that. It breaks my heart that you have been handed this card at such a young age. I've been at it for a few years now, since age 46.

I relate to your description of pain as I have progressive small fiber polyneuropathy (motor and sensory). It's a real challenge to try and use a body that feels like you've climbed Mount Everest daily! 😣

If you are up for sharing, I'd also like to hear more about your diagnosis path and what plan, going forward, your Drs. have for you. What institutions have you visited? Are you on any medication that you feel helps in some way?

I'd imagine your past 8 months have been a whirlwind. I'm heartbroken right along side you but know that with support, care and compassion… you (we) will get through this life altering experience one way or another. Be well.
Rachel

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@laurask Hi Laura, and welcome to Connect. I really have no knowledge about what you are going through but I wanted to welcome you and express my sympathy that you can no longer do things you love. That's difficult at any age, but more so when you are young as you are.
You have some responses here that are more knowledgeable than what I could offer and also some suggestions. I too wonder what led to your diagnosis, and what is the prognosis?
JK

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@contentandwell

@laurask Hi Laura, and welcome to Connect. I really have no knowledge about what you are going through but I wanted to welcome you and express my sympathy that you can no longer do things you love. That's difficult at any age, but more so when you are young as you are.
You have some responses here that are more knowledgeable than what I could offer and also some suggestions. I too wonder what led to your diagnosis, and what is the prognosis?
JK

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Hi! I truly appreciate your kindness and response. To this day, we still have no idea what caused my illness. My thiamine level was undetectable which points to malnutrition/chronic alcoholism (I rarely drink) or possibly a genetic mutation of some sort. Duke concluded that it is not a genetic issue. I am on the waiting list of neurology at the Mayo Clinic & praying that we find this missing link. I have had a handful of EMG tests. Due to those results, my prognosis is fair for partial recovery during the next two years. I constantly work with my hands and do everything I can to “wake them up”. My walking and stability has greatly improved as long as I’m wearing tennis shoes. Without them, I am not able to put my ankle to the floor due to tightness in my Achilles tendon. For now, I will work on responding to these messages. Thank you again for reaching out. I wish you all of the best!

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@rwinney

Hey Laura @laurask, I'm Rachel and am very glad you found us here on Connect! I definitely know you will benefit by partaking and learning from others here, I certainly do.

You speak my language with your diagnosis and struggles, I'm so sorry for that. It breaks my heart that you have been handed this card at such a young age. I've been at it for a few years now, since age 46.

I relate to your description of pain as I have progressive small fiber polyneuropathy (motor and sensory). It's a real challenge to try and use a body that feels like you've climbed Mount Everest daily! 😣

If you are up for sharing, I'd also like to hear more about your diagnosis path and what plan, going forward, your Drs. have for you. What institutions have you visited? Are you on any medication that you feel helps in some way?

I'd imagine your past 8 months have been a whirlwind. I'm heartbroken right along side you but know that with support, care and compassion… you (we) will get through this life altering experience one way or another. Be well.
Rachel

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Hey @rwinney! I’ll be saying this 100 times but that’s okay. I truly appreciate your kind response. I’d love to hear more about your story. I am so sad to know that you are going through this battle as well but it means that you’re a trooper to say the least.

Well, during blood tests at my initial hospital stay, I tested negative for absolutely everything under the sun. I had an MRI of my brain and spine. CT scans. Absolutely normal to my surprise. The only test that proved my (somewhat) sanity was the EMG. This showed chronic nerve degeneration which finally explained why I couldn’t feel the majority of my legs and hands. I also had a nerve biopsy done on my left ankle which also showed extreme axonal damage. Throughout these tests, I did five treatments of plasmapheresis, five treatments of IVIG, and three treatments of steroids. Absolutely no change. Duke suspected Beriberi to be the cause because of my low vitamin levels but my neurologist in Greenville is far from convinced. I am currently on the waiting list for the neurology department at Mayo. Other than that, I don’t have a plan.

Medication wise, I take the highest dose of gabapentin (my best friend) five times a day, a muscle spasm medication three times a day, oxy three times a day, as well as a handful of other nerve pain assistive medications. I feel that the best relief comes from a steaming hot shower. I’ve had one appointment at a pain clinic and waiting for my follow up to see what the doctor wants to do. I’ll keep you updated!

Thank you doesn’t begin to express my gratitude for showing me support and kindness during this time. You’re wonderful!

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@laurask

Hey @rwinney! I’ll be saying this 100 times but that’s okay. I truly appreciate your kind response. I’d love to hear more about your story. I am so sad to know that you are going through this battle as well but it means that you’re a trooper to say the least.

Well, during blood tests at my initial hospital stay, I tested negative for absolutely everything under the sun. I had an MRI of my brain and spine. CT scans. Absolutely normal to my surprise. The only test that proved my (somewhat) sanity was the EMG. This showed chronic nerve degeneration which finally explained why I couldn’t feel the majority of my legs and hands. I also had a nerve biopsy done on my left ankle which also showed extreme axonal damage. Throughout these tests, I did five treatments of plasmapheresis, five treatments of IVIG, and three treatments of steroids. Absolutely no change. Duke suspected Beriberi to be the cause because of my low vitamin levels but my neurologist in Greenville is far from convinced. I am currently on the waiting list for the neurology department at Mayo. Other than that, I don’t have a plan.

Medication wise, I take the highest dose of gabapentin (my best friend) five times a day, a muscle spasm medication three times a day, oxy three times a day, as well as a handful of other nerve pain assistive medications. I feel that the best relief comes from a steaming hot shower. I’ve had one appointment at a pain clinic and waiting for my follow up to see what the doctor wants to do. I’ll keep you updated!

Thank you doesn’t begin to express my gratitude for showing me support and kindness during this time. You’re wonderful!

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Awww girl, @laurask, thank you…I feel your fighting spirit and maturity.

I agree on the hot shower, so therapeutic. I now use a shower mat for better stability and comfort. Although I can't be in long bc of pain /discomfort, heat is calming to overactive nerves. My journey has most of your pieces but, spanned over a few years instead of a month in the hospital. A longer version of putting a puzzle together, that's all. Some of my pieces still don't fit, like yours!

I'm glad your EMG provided something solid. It does ease the mind a bit when you grab a hold of proof. I'm also happy to hear you are finding pain management while the investigation continues.

Keep hope alive… with optimism and your own advocacy. Glad to meet you and I look forward to positive updates.
Rachel

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@laurask

Hi! I truly appreciate your kindness and response. To this day, we still have no idea what caused my illness. My thiamine level was undetectable which points to malnutrition/chronic alcoholism (I rarely drink) or possibly a genetic mutation of some sort. Duke concluded that it is not a genetic issue. I am on the waiting list of neurology at the Mayo Clinic & praying that we find this missing link. I have had a handful of EMG tests. Due to those results, my prognosis is fair for partial recovery during the next two years. I constantly work with my hands and do everything I can to “wake them up”. My walking and stability has greatly improved as long as I’m wearing tennis shoes. Without them, I am not able to put my ankle to the floor due to tightness in my Achilles tendon. For now, I will work on responding to these messages. Thank you again for reaching out. I wish you all of the best!

Jump to this post

@laurask you seem to be doing everything humanly possible. I hope and pray that you get some positive results. I have a daughter named Laura and hearing what you have gone through makes me think how concerned I would be for her if she had these problems. No parent ever wants to see their child, whether a young child or an adult, having problems such as these.
JK

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@jimhd

@laurask
SSSSAP – that's a mouthful. I have idiopathic small fiber polyneuropathy that started with tingling and numbness in my feet and legs below my knees. After a time the burning pain began in the balls and heels of both feet, and now is in the whole feet and ankles. By the end of 1916, the pain had become unbearable, so I had a spinal cord stimulator implant in June of 2017. That gave me 75% pain reduction that continued for a year. After that, I have had to have the stimulator amplifiers adjusted every three months. I guess it's still giving me some relief. It's hard to know sometimes, what with the meds I take – which one is treating the pain and which ones aren't.

I also have autonomic neuropathy, and none of the doctors will say if it's the cause of several other things that are going on in this aging body of mine. Double vision, esophageal dysmotility, etc. Neuropathy is no laughing matter, is it. Have you found anything that eases the pain? Medications and non-medication? My prayers and best wishes from here to you.

Jim

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Hey @jimhd
Thank you for taking the time to read and respond to my message. Truly means a lot. Reading about your spinal cord implant is very interesting. I take oxycodone three times per day. This provides the most pain relief for me, but over the past week, I’ve developed an itchy rash situation side effect…not fun. Hopefully switching to hydrocodone today. I also take the highest dosage of gabapentin five times per day. I refer to it as “my best friend“. In addition to these, I take a handful of other medications that are supposed to relieve nerve pain. Like you mentioned, it’s hard to say what works and what doesn’t due to the amount of medications taken at once.

This Friday, I have an appointment for a light therapy treatment. My therapist brought it up so I’m going to give it a try even though I’m a bit skeptical. I’ll let you know if it ends up being a successful treatment.

Wish you the absolute best!
Laura

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@contentandwell

@laurask you seem to be doing everything humanly possible. I hope and pray that you get some positive results. I have a daughter named Laura and hearing what you have gone through makes me think how concerned I would be for her if she had these problems. No parent ever wants to see their child, whether a young child or an adult, having problems such as these.
JK

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@contentandwell I read your message to my mom, Jan. She says that you picked a wonderful name for your daughter 😊

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