1. < Neuropathy

Newly diagnosed with Neuropathy - Advice?

Posted by Janet @duh1eye, Aug 22 12:24pm

I’ve been following this very informative Neuropathy Support Group since April, when I began experiencing numbness in my feet, and paresthesia of my (mostly lower) legs. I didn’t want to post until I had a diagnosis, which I’ve just received: mild sensorimotor length-dependent large fiber peripheral neuropathy. Fortunately, my condition is mild, and likely slow in progressing, but as I go forward, I want to know about, and do everything possible to stay healthy, and to prevent further symptoms (don’t we all!). I’ve read, and have learned from, many of your helpful comments, but as being newly diagnosed, I would like to reach out to ask you what you wish you had known or done differently as you began of your own journey with peripheral neuropathy. I know this is a very broad inquiry, and each one of you has a different story, but it would be great to get any pearls of wisdom you may want to share. Thank you for your support!

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

dlydailyhope | @dlydailyhope | Aug 23 9:32am
In reply to @duh1eye "My symptoms started in late March with the classic sensation of feeling like I was “wearing..." + (show)
@duh1eye

My symptoms started in late March with the classic sensation of feeling like I was “wearing socks” or had dipped my feet is wax, which prompted a visit to my primary care provider, and ultimately to a neurologist. The numbness (no pain) in my feet quickly advanced to above my knees, with variable intensity. Since then, I’ve experienced what I’ve called a “chilled” sensation in my arms, legs and back (not present all the time), which, just over the last couple days, almost feels like a light sunburn. At this point, I’ve had no balance or mobility issues, although, I have, independently of PN, been doing balance excercises twice a day (while I’m brushing my teeth;-), for years.
I have had: blood tests; lumbar spine xray; sensory evoked potentials; MRIs of lumbar, thoracic and cervical spine; and EMG/conduction study, which revealed my diagnosis.
As to cause, I did have a severe bug bite a couple of months before my symptoms began, which could be the cause, but at this point, that’s no way of knowing. In all likelihood, I, as so many others, am dealing with ideopathic PN. I haven’t been prescribed any medications at this point, but my follow up with the neurologist isn’t for a few weeks. But because of what I’ve learned on this blog, I began 600 mg alpha lipoic acid a couple of weeks ago, after consulting with my primary.

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@duh1eye
Did you get tested for Lyme disease? You may want to talk to your neurologist about CIDP and potentially get a spinal tap to confirm. CIDP is an autoimmune attack on nervous system. It may not hurt to also see a rheumatologist for autoimmune testing.

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1 reply
heisenberg34 | @heisenberg34 | Aug 23 9:39am
In reply to @duh1eye "Thank you, John, for your speedy and helpful response. I have just begun to peruse the..." + (show)
@duh1eye

Thank you, John, for your speedy and helpful response. I have just begun to peruse the extensive Foundation for Peripheral Neuropathy website, and your suggestions will give me a good place to begin my exploration. Fortunately, I have not experienced pain, so I have not yet needed pain relief. I began 600 mg/day of ALA, a couple of weeks ago, and I just ordered r-ALA, which I’ve read is more effective. I will likely switch to that when it arrives. Other than staying physically active, doubling down on a healthy diet, and making sure I get good sleep, that’s about all I’ve done, to this point. I have had a series of Bemer treatments, which have helped my knee arthritis, but I’m unsure about its potential help for FM. I’m open to suggestions re that.

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I would advise you not to rush into any kind of surgery unless it is an emergency. I had a spinal fusion in 2017 for supposed spondylithesis (two adjacent vertebrae out of alignment). Previous MRIs showed nothing remarkabke. but a new orthopaedic surgegeon orderd another one.
that's when he said I had the condition. I was fairly new to the pain game, so I went ahead with the surgery. Did it help with my pain? No. Did it correct the condition? Possibly. Who knows? If I could go back in time,I would get a second, even third opinion and would think long and hard about having back surgery.

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Janet | @duh1eye | Aug 23 9:41am
In reply to @dlydailyhope "@duh1eye Did you get tested for Lyme disease? You may want to talk to your neurologist..." + (show)
@dlydailyhope

@duh1eye
Did you get tested for Lyme disease? You may want to talk to your neurologist about CIDP and potentially get a spinal tap to confirm. CIDP is an autoimmune attack on nervous system. It may not hurt to also see a rheumatologist for autoimmune testing.

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I did have a negative Lyme disease test. I’ve read a little about CIDP, but wasn’t tested for it. Thank you for this insight. I will discuss it during my follow up appointment.

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Janet | @duh1eye | Aug 23 9:47am
In reply to @heisenberg34 "I would advise you not to rush into any kind of surgery unless it is an..." + (show)
@heisenberg34

I would advise you not to rush into any kind of surgery unless it is an emergency. I had a spinal fusion in 2017 for supposed spondylithesis (two adjacent vertebrae out of alignment). Previous MRIs showed nothing remarkabke. but a new orthopaedic surgegeon orderd another one.
that's when he said I had the condition. I was fairly new to the pain game, so I went ahead with the surgery. Did it help with my pain? No. Did it correct the condition? Possibly. Who knows? If I could go back in time,I would get a second, even third opinion and would think long and hard about having back surgery.

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Fortunately, no surgery has been recommended. My MRIs showed a typically aging back, but nothing that warranted surgery.

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Ray Kemble | @ray666 | Aug 23 11:05am
In reply to @dbeshears1 "Hi Janet! If you add the word Idiopathic and change the word “mild” to “severe”, I..." + (show)
@dbeshears1

Hi Janet! If you add the word Idiopathic and change the word “mild” to “severe”, I have what you have. It sounds like you are out of the gate running and full of determination already, and just by finding this forum are so far ahead in confronting this PN head on.

I feel like I was doing a lot of the right things, but since it took me a couple of years to stumble on this Mayo Connect forum, I was on my own, guessing my way through living with this thing, without validation that I was doing good or bad for myself. EXCEPT for Physical Therapy - that was and continues to be my foundation for getting through the life challenge of PN. I have a daily exercise routine at home, and schedule professional sessions when I need some tuning up.

What I wish I’d done differently perhaps was to have gotten the chip off my shoulder sooner. While I think some frustration in lack of medical direction and support in dealing with PN is normal, in hindsight, I wish I hadn’t spent the negative energy, as all our energy could be much better used to positively figure out what we can be doing to help ourselves. Sure, we all want to understand what “happened” to us and want to help doctors find a “cure” for us, but the only thing we can control today is finding what works for us to maintain or improve living with this, and try our best not to regress.

It seems to you’ve hit the ground running, I love your determination and motivation, and hope we learn a lot from you!

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" I have a daily exercise routine at home, and schedule professional sessions when I need some tuning up."

Good morning, Debbie. I like the simplicity of your approach: a daily routine at home and professional coaching when you feel you need a "tune up." I'm a decision point right now. I've been enjoying the benefit of at home coaching, covered by my insurance, not because of my PN but my sepsis. That coverage ends on 9/3. Thanks to the coaching I've been getting, I've cobbled together a reasonably good at home routine, but that professional coaching has only a few days to go. I know that I'll need an occasional "tune up." It's time for me to have a couple of chats with my various doctors, chiefly with my primary, about either an extension to my coverage (which may not be possible) or some out-of-pocket coaching. I know how vital this is, especially (for me) maintaining leg strength.

I was reminded only last evening of the importance of maintaining leg strength: I did another one of my unplanned "sit-downs," turning too abruptly and plopping onto a nearby ottoman. I'd prefer not to call my unplanned "sit-downs" falls (although that's what they are). I got up (laughing a bit at how challenging it was to get up :-)), uninjured, but reminded once again of the absolute importance of maintaining good leg strength.

Cheers!
Ray (@ray666)

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Judyinjeans. | @judyingenes | Aug 23 3:58pm

Lots of good suggestions here...
Two things I have worked on every day since "Discovering" that I have PN. I say that because I was never diagnosed and lived in the land of, "Oh yeah, it's a good idea if you exercise a little if your walking is a bit shaky," This was 15 or more years ago and I probably shouldn't identify the large health care provider who to this day has NO Neurologist in my area. Don't get me started!
The two things that I feel that you need, to have as much control over as possible when dealing with Neuropathy are balance and strength.
Balance-I use crutches when I walk for several reasons instead of a walker and when I walk I look for what will make me fall. Not at my companions, the scenery around me ( I do that after I get where I'm going and sit down), or anything else that might distract from what might make me fall. I do balancing exercises as well...daily. Too many older women never recover from a bad fall. That's NOT going to be me.
Strength-Since I use crutches, I rely on my arms and upper body to propel me around, and I am not a small youngster, so I need strength to do that all day long. I lift weights and use bands to give myself a good workout every day! I am 84 and this is not fun. I know it is necessary to get me through the more and more frequent days when I can...barely make it through the day. I also do strength training on my feet and legs. I want to decide for myself where I will live and keeping strong makes me able to care for myself longer.
You hear a lot about range of motion and keeping flexible as you age. That's fine, but if you injure yourself that's a whole new chapter to deal with on top of Neuropathy.

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Janet | @duh1eye | Aug 23 5:20pm

Judy, you are an inspiration! I admire your determination, and especially your focus on balance and strengthening. Exercise and movement seem to be common threads in many of the helpful comments that have been shared. Thank you! Keep up the the good work!

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1kay2 | @1kay2 | Aug 23 6:13pm
In reply to @johnbishop "Welcome @duh1eye, You will notice that we changed the title of your discussion a little to..." + (show)
@johnbishop

Welcome @duh1eye, You will notice that we changed the title of your discussion a little to hopefully bring in other newer members looking for help with neuropathy. I posted my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. My suggestion would be to keep doing what you are doing now, asking questions and learning as much as you can about the condition and what treatments are available.

There are quite a few members who have started discussions and commented on the topic "neuropathy what helps". Here's a search link with the results - https://connect.mayoclinic.org/search/?search=neuropathy+what+helps.

The Foundation for Peripheral Neuropathy site is a wealth of information also. Here are a couple of their references that I've found helpful:
-- Living Well with PN: https://www.foundationforpn.org/living-well/
-- Videos on their YouTube channel: https://www.youtube.com/@foundationforperipheralneu4122/videos

If you don't mind, can you share about any treatments that you have tried or found helpful?

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I found what helps in the calves and legs - gluts is stretches, good shoes and walking.

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NJ Ed | @njed | Aug 24 6:31am

@duh1eye Hi Janet - Glad to see you are off to a good start. I've been a member of this forum for several years and I have rarely seen so many responses in a day or so which means you have hit on a subject of interest to many of us. Advice. And those of us with PN know best what we are going through. I was diagnosed with idiopathic sensorimotor axonal PN about 8 years ago and confirmed by Mayo in MN. I like the idea you are working with a trainer and for me, the more active I can be, the better I feel. There are good and bad days which no doubt, we all feel. My largest problem is numbness and increasingly poor balance. Doctors can tell you what you have but I have found that those living with PN are best to give clues on what works for them. Since you have been following this forum for a few months, you know what might work for one will not work for all. I'd like to make two suggestions. First, remain positive and second, remain active. I wish you the best!
Ed

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2 replies
Janet | @duh1eye | Aug 24 9:09am
In reply to @njed "@duh1eye Hi Janet - Glad to see you are off to a good start. I've been..." + (show)
@njed

@duh1eye Hi Janet - Glad to see you are off to a good start. I've been a member of this forum for several years and I have rarely seen so many responses in a day or so which means you have hit on a subject of interest to many of us. Advice. And those of us with PN know best what we are going through. I was diagnosed with idiopathic sensorimotor axonal PN about 8 years ago and confirmed by Mayo in MN. I like the idea you are working with a trainer and for me, the more active I can be, the better I feel. There are good and bad days which no doubt, we all feel. My largest problem is numbness and increasingly poor balance. Doctors can tell you what you have but I have found that those living with PN are best to give clues on what works for them. Since you have been following this forum for a few months, you know what might work for one will not work for all. I'd like to make two suggestions. First, remain positive and second, remain active. I wish you the best!
Ed

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Thank you, Ed, for your kind words, and encouragement. I have never been on any forum, of any kind, so it was a stretch for me to even begin participating in this one. But am I ever glad I did, and so early in my PN journey. I am determined to keep my chin up, and my body moving, and am grateful for a throng of folks who know what I’m experiencing, to cheer me on.

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