Axonal Sensorimotor Polyneuropathy: Looking for someone to relate

Posted by Laura @laurask, Mar 16, 2020

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.

Interested in more discussions like this? Go to the Neuropathy group.

@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!

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@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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@laurask

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

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Thanks @laurask I think so too. She actually didn't have a name for her first couple of days, I couldn't decide. The nurses teased me and said I couldn't take her home until I named her! I am very happy that Laura is the name I settled with, and it sounds as if your mom is too.
JK

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@laurask

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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@laurask

I take a variety of meds for different kinds of pain. For arthritis, I take Meloxicam and acetaminophen, and topical Voltaren. For neuropathy pain, I take ms contin and imipramine. I also take Clonazepam for anxiety. I fell 12' several years ago and fractured two vertebrae and broke an elbow. It took a couple of years to be pain free, but I keep oxycodone and a muscle relaxer for when I do too much lifting, but I rarely take them. Of course, the spinal cord stimulator is an important part of my pain management. I don't tolerate hydrocodone. It really causes stomach pain. Gabapentin didn't do it for me. I tried that several years ago and I think it affected my cognition. My wife notices that kind of thing when I don't, but sometimes she accuses me of being out of it when I actually feel pretty alert. My therapist pointed out to me that the ms contin can definitely dull the brain. I think I take such a low dose and have taken it for so long that my brain and body are used to it. I take it in the morning and at bedtime. At night, I'm all for sedation.

The pain in my feet has been changing over the past few months. It's spread to include my whole foot and has moved up to my ankles. And now it's changed so that socks are painful, so I wear open sandals with extra insole cushioning and no socks. I still can't walk barefoot because of the pain. It's a strange feeling when my feet are numb but it really hurts to step on something or bump something. I don't feel change of temperature, as in not feeling that the tile floor is cold, or in the shower not feeling really hot water hitting them. I don't know if other people feel the same way. When a doctor put a large needle into the muscle on the top of my feet close to my toes, I didn't feel it at all. Some of these things are worrisome to diabetics, but I'm not diabetic. I'm thankful that I don't have that to add to my list.

Time for sleep.

Jim

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I have been diagnosed with axonal sensorimotor neuropathy and do not understand the difference between this and peripheral neuropathy. Can anyone tell me the difference

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@bvw

I have been diagnosed with axonal sensorimotor neuropathy and do not understand the difference between this and peripheral neuropathy. Can anyone tell me the difference

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bvw – I have been diagnosed by Mayo in MN and Johns Hopkins with idiopathic axonal sensorimotor PN and like yourself, it is confusing to say the least. My dx was in Feb 2020, dealing with this not easy. I've found out that there are many types of neuropathies caused by many different reasons. I'm not in medical field and offer no advise other than just an opinion. I think when the peripheral nerves are impacted, it can cause various problems and many symptoms depend on the cause. The way in which the nerves are damaged and to the degree of damage can also cause different symptoms. In our case, the axons are damaged, and we likely have similar symptoms, perhaps not identical. Our axonal sensorimotor neuropathy is just one of the various types of PN. Some people have just sensory problems and not motor. The Mayo website has some great info on the various types of PN. Always remember, you are not alone in this. I wish you the best and remain as active as you can. It's not easy, I know. Ed

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@bvw

I have been diagnosed with axonal sensorimotor neuropathy and do not understand the difference between this and peripheral neuropathy. Can anyone tell me the difference

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Hi @bvw, You will notice that we merged your post with an existing discussion on the condition so that you could meet @njed @laurask @jimhd and others. If you click the link below, it will take you to the top of the discussion so that you can read what others have shared:

— Axonal Sensorimotor Polyneuropathy: Looking for someone to relate:
https://connect.mayoclinic.org/discussion/someone-to-relate/
One of the best explanations of diagnosing the different neuropathies in an easy to understand way that I have found is by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.

He also has a YouTube channel that has a lot of great information if you want to learn more about the conditions – https://www.youtube.com/c/MatthewBJensen

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