Spreading Sensory Peripheral Neuropathy-Declined by Mayo - What next?

Posted by zwieper @zwieper, May 30 4:00pm

Hi all, this is my first post, but I've been lurking for a couple weeks as I look for information and guidance. I am a 55-yr-old woman who has been experiencing slowly worsening Sensory Peripheral Neuropathy. I received chemotherapy for colorectal cancer from November 2018 – April 2019. I developed neuropathy in my hands and feet at dose 10 of 12. I had pins and needles and numbness constantly. The neuropathy remained strong through 2019 but seemed to be easing up/going away during the summer of 2020. My husband and I hike a lot and while the neuropathy was still present, it was less intense and at times I could not feel the tingling in my feet.

Last year in May, I began to notice that the neuropathy was back and beginning to move up my legs and increase in intensity in my feet and hands. Over the last 12 months it has crept up into my pelvis, and from my hands up to my shoulders; it is now on my face with my tongue and lips occasionally tingling as well. My bladder and bowel function is affected already, and on occasion I can feel a "buzzing" in my abdomen. Thankfully the neuropathy isn't particularly painful aside from stabs of pain in my feet at times. But it can be uncomfortable.
I do not take gabapentin as whatever mild relief I get isn't worth the additional sleepiness and fogginess. In addition to the neuropathy, I have experienced a cognitive decline, and struggle to find words at times. I was referred to a neurologist, and have had MRIs, extensive blood work, and an EMG. The EMG showed that the neuropathy is sensory only. MRIs and bloodwork have all been normal. I do not have diabetes.

My neurologist sent in a referral to Mayo Clinic. I received an email at the end of last week informing me that Mayo will not see me. I'm pretty devastated to say the least. I know it's not personal, and I'm normally a fairly upbeat person, and can handle a lot, but all this waiting as my neuropathy gets worse is taking a toll. Given that it is a holiday weekend, I have not heard back from my neurologist, and have had too much time to mope while trying to find answers.

Any of you have a similar story with spreading neuropathy? I understand that this is likely idiopathic; but at what point do you stop looking for answers? I know there are other specialty clinics around, what has been your experience?

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

Hello @zwieper, Welcome to Connect. I know you are feeling a little down and disappointed in not getting an appointment at Mayo. I don't think you should stop looking for answers. There is always hope and staying positive and taking it one day at a time brings tomorrow and more possibility of hope. I've learned there is no real cure for neuropathy but there are a lot of treatments that can make a significant difference in relief for the symptoms of the condition.

You might find these related discussions helpful:
— Sensory Peripheral Neuropathy: https://connect.mayoclinic.org/discussion/sensenory-peripheral-neuropathy/
— Cryotherapy – Does it provide relief for sensory neuropathy?: https://connect.mayoclinic.org/discussion/cryotherapy-does-it-provide-relief-for-sensory-neuropathy/

You might also find this discussion helpful although not specific for sensory neuropathy — Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

I use these two sites when I'm trying to learn more about neuropathy and available treatments:
— Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
— Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Have you done any research to learn more about your condition?

REPLY

So sorry to read this, and to hear you were turned down by Mayo Clinic. I think you deserve to know why you are not being accepted for a possible diagnosis beyond idiopathic neuropathy. So, perhaps your neurologist can intervene and re-refer you. In any case, John’s suggestions can help as well, and this site is helpful—as we deal with waiting for answers and possible treatment.

REPLY

I too am new to this group. However I am not new to the world of neuropathy. Your story really resonated with me. For the past eight years, I have gone from an active, strong and healthy person, to one whose daily life is impacted by small-fiber polyneuropathy. I am a nurse, and it took me eight long years to finally get this diagnosis. I was initially diagnosed with fibromyalgia, but I've known this whole time that that diagnosis just wasn't right.

I too was turned down by Mayo Clinic early in the process. I too was devastated. I felt like it was my last hope, and the rejection seemed so final. That was over seven years ago.

My best advice with a chronic, progressive illness like this is to be your own advocate. No one will care about your story as much as you do, even the best doctors in the country. That sounds harsh, but I know this because I was a specialist in my field, before I had to retire early. My patients that did best had accepted their situation, and had already researched and sought out solutions that would work for them. I talked to them for 15-30 minutes every few weeks, but they lived with it every single day.

Long story short, I have made many adaptations in my home and personal life to deal with the physical limitations. Like you, I love to hike. I've found a women's group that has several compromised members, and will go slow and stop as much as needed. I really resisted swimming for exercise (ugh, the chorine, the tight swimsuits, being wet and drippy….). However, I finally gave in, and have been swimming (with a mask and snorkel) for the past year. Not what I want to be doing, but I can no longer do what I want to do, right?

I have stepstools and benches around my house and yard so I can sit for chores. I have stopped cooking, and no longer feel guilty about it. Prepared food is just fine. It's only food. I have changed the type of luggage I use. I have no problem using a cane when I need it. Etc etc.

It took me a long, long time to reach this acceptance. However I can say now that most days are happy, I am mostly content, and life is good. I see all my doctors, but no longer expect them to solve my problems. I take all the medication that I need in order to minimize my suffering. Lyrica makes me so stupid, so I just tell people up front that I have trouble with memory and sharpness. I take naps throughout the day.

Most people who see me have no idea I have this illness. It's an invisible disability.

I really, truly give thanks every day for the things I can do, and try to graciously accept my new normal.

Hope this helps. You are definitely not alone in this!

REPLY
@julbpat

I too am new to this group. However I am not new to the world of neuropathy. Your story really resonated with me. For the past eight years, I have gone from an active, strong and healthy person, to one whose daily life is impacted by small-fiber polyneuropathy. I am a nurse, and it took me eight long years to finally get this diagnosis. I was initially diagnosed with fibromyalgia, but I've known this whole time that that diagnosis just wasn't right.

I too was turned down by Mayo Clinic early in the process. I too was devastated. I felt like it was my last hope, and the rejection seemed so final. That was over seven years ago.

My best advice with a chronic, progressive illness like this is to be your own advocate. No one will care about your story as much as you do, even the best doctors in the country. That sounds harsh, but I know this because I was a specialist in my field, before I had to retire early. My patients that did best had accepted their situation, and had already researched and sought out solutions that would work for them. I talked to them for 15-30 minutes every few weeks, but they lived with it every single day.

Long story short, I have made many adaptations in my home and personal life to deal with the physical limitations. Like you, I love to hike. I've found a women's group that has several compromised members, and will go slow and stop as much as needed. I really resisted swimming for exercise (ugh, the chorine, the tight swimsuits, being wet and drippy….). However, I finally gave in, and have been swimming (with a mask and snorkel) for the past year. Not what I want to be doing, but I can no longer do what I want to do, right?

I have stepstools and benches around my house and yard so I can sit for chores. I have stopped cooking, and no longer feel guilty about it. Prepared food is just fine. It's only food. I have changed the type of luggage I use. I have no problem using a cane when I need it. Etc etc.

It took me a long, long time to reach this acceptance. However I can say now that most days are happy, I am mostly content, and life is good. I see all my doctors, but no longer expect them to solve my problems. I take all the medication that I need in order to minimize my suffering. Lyrica makes me so stupid, so I just tell people up front that I have trouble with memory and sharpness. I take naps throughout the day.

Most people who see me have no idea I have this illness. It's an invisible disability.

I really, truly give thanks every day for the things I can do, and try to graciously accept my new normal.

Hope this helps. You are definitely not alone in this!

Jump to this post

Good morning @julbpat, what a wonderful introduction. Doesn't your acceptance of SFN and all its symptoms and conditions relieve you from the frustration and ongoing disappointment that comes when you learn that there really is no cure? I am sure many Connect members will learn from you as well as be willing to share their concerns and accomplishments.

Thanks for sharing your commitment to activities that help maintain your health and well-being. I just finished my Yoga/stretch class which I have attended for years. Are you doing any stretching before your exercise routine?

Would you be open to sharing the medications that you take to "minimize your suffering"?

May you be free of suffering and the causes of suffering.
Chris

REPLY
@artscaping

Good morning @julbpat, what a wonderful introduction. Doesn't your acceptance of SFN and all its symptoms and conditions relieve you from the frustration and ongoing disappointment that comes when you learn that there really is no cure? I am sure many Connect members will learn from you as well as be willing to share their concerns and accomplishments.

Thanks for sharing your commitment to activities that help maintain your health and well-being. I just finished my Yoga/stretch class which I have attended for years. Are you doing any stretching before your exercise routine?

Would you be open to sharing the medications that you take to "minimize your suffering"?

May you be free of suffering and the causes of suffering.
Chris

Jump to this post

Yes, I do stretching, actually throughout the day. I'm terrible at keeping a routine. My chiropractor scolds me about this ! I see him every two weeks, and he does some wonderful stretching, focusing on whatever part is hurting me the most that week. I also am going to Pool Therapy every week right now – (until insurance stops paying!)and do Watsu therapy in the warm water. However these therapies are expensive and time-consuming, and unfortunately the results do not last even 24 hours. I have tried all kinds of therapy, and paid lots of money for massages!
My medications are Lyrica 75 mg 3-4 times per day. Gabapentin did not work for me after a while, and made me so sleepy. I'm starting to see the same effects after 5 months on Lyrica, steadily increasing my dose. I see a pain doctor, and have been taking 10 mg of Percocet per day for many years now. Baclofen surprisingly helps, especially towards the end of the day. And Ambien is essential. As you can see, I have several controlled substances, and things that don't mix well, and make my doctors uncomfortable. But I think by now they trust my judgement. I only take what I need, and am always compliant, and show that I am trying my best to live a good life. I never dreamed I would end up on so many medications, and I still have pain almost all of the time. The medications just tone it down.

Also, my length-dependent small fiber polyneuropathy is fairly recent. I had skin biopsies done in March that confirmed this. I am fortunate to live in a city with a renowned bioengineering firm. I was just accepted by Hudson-Alpha as a patient in their Clinic for Genomic medicine. I will have a neuropathy panel performed (actually going to the lab tomorrow) to determine if this is hereditary. I'm fairly certain that it is, as several family members have the same condition. This makes a lot more sense than fibromyalgia (although I probably have that too) and makes it easier to accept this, and decide how I am going to live well even with pain and fatigue!

REPLY
@julbpat

Yes, I do stretching, actually throughout the day. I'm terrible at keeping a routine. My chiropractor scolds me about this ! I see him every two weeks, and he does some wonderful stretching, focusing on whatever part is hurting me the most that week. I also am going to Pool Therapy every week right now – (until insurance stops paying!)and do Watsu therapy in the warm water. However these therapies are expensive and time-consuming, and unfortunately the results do not last even 24 hours. I have tried all kinds of therapy, and paid lots of money for massages!
My medications are Lyrica 75 mg 3-4 times per day. Gabapentin did not work for me after a while, and made me so sleepy. I'm starting to see the same effects after 5 months on Lyrica, steadily increasing my dose. I see a pain doctor, and have been taking 10 mg of Percocet per day for many years now. Baclofen surprisingly helps, especially towards the end of the day. And Ambien is essential. As you can see, I have several controlled substances, and things that don't mix well, and make my doctors uncomfortable. But I think by now they trust my judgement. I only take what I need, and am always compliant, and show that I am trying my best to live a good life. I never dreamed I would end up on so many medications, and I still have pain almost all of the time. The medications just tone it down.

Also, my length-dependent small fiber polyneuropathy is fairly recent. I had skin biopsies done in March that confirmed this. I am fortunate to live in a city with a renowned bioengineering firm. I was just accepted by Hudson-Alpha as a patient in their Clinic for Genomic medicine. I will have a neuropathy panel performed (actually going to the lab tomorrow) to determine if this is hereditary. I'm fairly certain that it is, as several family members have the same condition. This makes a lot more sense than fibromyalgia (although I probably have that too) and makes it easier to accept this, and decide how I am going to live well even with pain and fatigue!

Jump to this post

Your journey, acceptance, and inspiration are commendable! I admire all of the energy you are putting into living and managing the inevitable discomfort of this condition! You are certainly one of the good role models on here. I have learned so much from people in this group,
I am getting closer and closer to this final acceptance. There are a couple of diagnostics that I believe have been lacking in my case, but if I can get a little more closure on the type of idiopathic condition I have, I hope to be able to target my therapy more to what people offer on here that helps them with specific conditions. I like your optimism; I try to celebrate little victories, like pushing a shopping cart through a grocery store the other day instead of using the electric cart!

REPLY
@julbpat

I too am new to this group. However I am not new to the world of neuropathy. Your story really resonated with me. For the past eight years, I have gone from an active, strong and healthy person, to one whose daily life is impacted by small-fiber polyneuropathy. I am a nurse, and it took me eight long years to finally get this diagnosis. I was initially diagnosed with fibromyalgia, but I've known this whole time that that diagnosis just wasn't right.

I too was turned down by Mayo Clinic early in the process. I too was devastated. I felt like it was my last hope, and the rejection seemed so final. That was over seven years ago.

My best advice with a chronic, progressive illness like this is to be your own advocate. No one will care about your story as much as you do, even the best doctors in the country. That sounds harsh, but I know this because I was a specialist in my field, before I had to retire early. My patients that did best had accepted their situation, and had already researched and sought out solutions that would work for them. I talked to them for 15-30 minutes every few weeks, but they lived with it every single day.

Long story short, I have made many adaptations in my home and personal life to deal with the physical limitations. Like you, I love to hike. I've found a women's group that has several compromised members, and will go slow and stop as much as needed. I really resisted swimming for exercise (ugh, the chorine, the tight swimsuits, being wet and drippy….). However, I finally gave in, and have been swimming (with a mask and snorkel) for the past year. Not what I want to be doing, but I can no longer do what I want to do, right?

I have stepstools and benches around my house and yard so I can sit for chores. I have stopped cooking, and no longer feel guilty about it. Prepared food is just fine. It's only food. I have changed the type of luggage I use. I have no problem using a cane when I need it. Etc etc.

It took me a long, long time to reach this acceptance. However I can say now that most days are happy, I am mostly content, and life is good. I see all my doctors, but no longer expect them to solve my problems. I take all the medication that I need in order to minimize my suffering. Lyrica makes me so stupid, so I just tell people up front that I have trouble with memory and sharpness. I take naps throughout the day.

Most people who see me have no idea I have this illness. It's an invisible disability.

I really, truly give thanks every day for the things I can do, and try to graciously accept my new normal.

Hope this helps. You are definitely not alone in this!

Jump to this post

Agree you need to be your own best advocate . I have neuropathy in fingers and feet from cervical stenosis . I am still fairly active but slower. I love how you found a woman’s group who go at a slower pace. May have to see if our church or senior center has a interest in forming a group.

REPLY

Has anybody used this grid as a guide when working with your neurologist to determine the underlying cause of the SFN and to see if any of the causes are treatable? I am trying to put together a tool to assist me in my understanding of my symptoms, diagnosis, and treatment?
https://neuropathycommons.org/sites/default/files/Tests%20SFPN%20causes%2011-07-17.pdf
Dr. Oaklander, out of Boston Mass General, authored the piece. Has anyone gone to Boston for treatment with her or her team?

REPLY

I’m so sorry that you are going through this. I can relate because I have the same issue of severe neuropathy which gradually got worse. The pain was so intolerable that it would just make me cry. I didn’t think I could go on any more. Thank God! there is hope🙏 I was prescribed Low Dose Naltrexone… this has made the pain tolerable.

REPLY

It is encouraging to read about things that I CAN do; now to find the umph to put it all together and DO them! Everything seems to take at least twice as long these days, and I am always underestimating. I am learning to put away my old mental "tape measures" used to use to determine success, but it's a struggle!

I learned today that my doctor has suggested a referral to 1 of 2 different clinics, University of Michigan Ann Arbor, or Cleveland Clinic. However, the staff has been so overwhelmed, that the referral hasn't been put in yet.

REPLY
@kmst1994

Has anybody used this grid as a guide when working with your neurologist to determine the underlying cause of the SFN and to see if any of the causes are treatable? I am trying to put together a tool to assist me in my understanding of my symptoms, diagnosis, and treatment?
https://neuropathycommons.org/sites/default/files/Tests%20SFPN%20causes%2011-07-17.pdf
Dr. Oaklander, out of Boston Mass General, authored the piece. Has anyone gone to Boston for treatment with her or her team?

Jump to this post

I have had a second opinion workup with Dr. Amanda Guidon, a neurologist at Massachusetts General, with offices at 165 Cambridge St., in Boston. She has worked with my primary neurologist, Dr. Kara Anne Stavros in Rhode Island at Brown Neurology in Providence. I had mentioned Dr. Oaklander to Dr. Stavros, but she thought Dr. Guidon would be a better fit, based on the tests I had already had. Both doctors have settled on an autoimmune reaction to either surgery. Anesthesia, infection or medication. Good news is that autoimmune opens up immunoglobulin infusions as a treatment. I have completed four out of six cycles and feel more strength in my legs. I also am going to Aquatherapy once a week, with a goal of eventually swimming again.
I hope this information is helpful for you.

REPLY

@zwieper, the B vitamins may be able to address your spreading neuropathy. Quick melt sublingual vitamin B12 in the form of methylcobalamin by passes the digestive system and brings it's benefits directly to the blood
stream. Thiamine (vitamin B1) is a another to bring to bear. Thiamine is subject to anti thiamine factors that diminish or destroy thiamine. The stuttersence link contains a comprehensive list. Thiamine also needs magnesium to activate it as well as vitamin D. Activated thiamine in turn activates vitamin B6 a vitamin which a deficiency causes peripheral neuropathy. Supplementing above the daily requirement for B6 in your age group should only be done with your doctor's supervision. A form of thiamine called benfotiamine offers high absorption. In general the B vitamins work better together. Utilizing a B complex and supplementing with methylcobalamin and thiamine offers a comprehensive approach to a spreading neuropathy. Always consult your health care professional before using any supplement.
https://www.researchgate.net/publication/339412930_Potential_Benefits_of_Methylcobalamin_A_Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208100/
http://stuttersense.blogspot.com/2014/08/these-factors-reduce-your-thiamine.html

REPLY
Please sign in or register to post a reply.
  Request Appointment