1. < Neuropathy

First peripheral neuropathy … and now a sepsis infection? $%*&#@

Posted by Ray Kemble @ray666, May 12 9:37am

Hello!

I’ve been AWOL from the Neuropathy Forum for a while, for 42 days to be exact, from the morning I was taken to the hospital to be diagnosed with a galloping sepsis infection. A few of you may remember me as the 79-year-old fellow in Colorado who, for the past ten years, has been dealing with idiopathic polyneuropathy.

Why am I returning to the Forum this morning? First, I want to say hello after having been away so long, especially to those with whom I have regularly exchanged posts in the past.

Second, to ask if other PNers have suffered with the double whammy: an ongoing struggle with PN, later exceeded in misery by a nasty sepsis infection. What was the experience like? What was your pre-existing PN? Cause of your sepsis? What were your sepsis symptoms? Have you recovered from your sepsis? How long did it take (if you’ve recovered)? Do you consider your sepsis recovery full, partial, or ongoing?

I look forward to any who have or are experiencing what I’m experiencing.

Cheers!
Ray

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

Ray Kemble | @ray666 | May 13 1:35pm
In reply to @ray666 "Hi, Ed (@njed). I missed Connect, too. I'll have more to say about this experience of..." + (show)
@ray666

Hi, Ed (@njed). I missed Connect, too. I'll have more to say about this experience of managing both PN and sepsis in the coming days. Still, for now, suffice it to say back in the days when I had only PN, I hadn't thought I'd ever confront a condition that contained even more of a physical wallop than PN. I sure have! How's things with you, Ed? I hope they're going reasonably well. Talk soon. I have home health on the way. ––Rar

Jump to this post

Hi, again, Ed (@njed).

My last post was a bit too social. Let’s see if I can keep this one more clinical and stick to the nuts and bolts of PN vs. sepsis, at least my personal early-on impression of the difference between the two.

As I believe you know, my idiopathic polyneuropathy gives me no pain and has never made me dizzy; instead, it wreaks havoc with my balance and ability to walk with confidence. At its worst, however, when I’m at my wobbliest, I have always had my strength, most critically in my legs where strength is most critical.

I am finding it disturbingly different with sepsis. My balance and ability to walk are still terrible, possibly more, but unlike with my PN, with my sepsis, I have practically no strength, least of all in my legs. Trying to go about, even from my recliner to the toilet, I’m reminded of those oversized balloon/mannequins that stand roadside, waving manically in the breeze, advertising this or that nearby business. At least, that’s how sepsis makes me feel – my plug’s been pulled, my batteries have been removed – so unlike my experience with my idiopathic polyneuropathy.

Weird stuff, this sepsis stuff.

Cheers!
Ray

REPLY
3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | May 13 7:04pm
In reply to @ray666 "Hi, again, Ed (@njed). My last post was a bit too social. Let’s see if I..." + (show)
@ray666

Hi, again, Ed (@njed).

My last post was a bit too social. Let’s see if I can keep this one more clinical and stick to the nuts and bolts of PN vs. sepsis, at least my personal early-on impression of the difference between the two.

As I believe you know, my idiopathic polyneuropathy gives me no pain and has never made me dizzy; instead, it wreaks havoc with my balance and ability to walk with confidence. At its worst, however, when I’m at my wobbliest, I have always had my strength, most critically in my legs where strength is most critical.

I am finding it disturbingly different with sepsis. My balance and ability to walk are still terrible, possibly more, but unlike with my PN, with my sepsis, I have practically no strength, least of all in my legs. Trying to go about, even from my recliner to the toilet, I’m reminded of those oversized balloon/mannequins that stand roadside, waving manically in the breeze, advertising this or that nearby business. At least, that’s how sepsis makes me feel – my plug’s been pulled, my batteries have been removed – so unlike my experience with my idiopathic polyneuropathy.

Weird stuff, this sepsis stuff.

Cheers!
Ray

Jump to this post

Welcome back, @ray666. Sepsis is scary stuff. There are several related discussions in case you want to check them out.
- Sepsis: What's your experience recovering from sepsis?
https://connect.mayoclinic.org/discussion/sepsis/

See all here: https://connect.mayoclinic.org/search/discussions/?search=sepsis

Recovery takes time. It's hard to be patient.

REPLY
NJ Ed | @njed | May 14 5:50am
In reply to @ray666 "Hi, again, Ed (@njed). My last post was a bit too social. Let’s see if I..." + (show)
@ray666

Hi, again, Ed (@njed).

My last post was a bit too social. Let’s see if I can keep this one more clinical and stick to the nuts and bolts of PN vs. sepsis, at least my personal early-on impression of the difference between the two.

As I believe you know, my idiopathic polyneuropathy gives me no pain and has never made me dizzy; instead, it wreaks havoc with my balance and ability to walk with confidence. At its worst, however, when I’m at my wobbliest, I have always had my strength, most critically in my legs where strength is most critical.

I am finding it disturbingly different with sepsis. My balance and ability to walk are still terrible, possibly more, but unlike with my PN, with my sepsis, I have practically no strength, least of all in my legs. Trying to go about, even from my recliner to the toilet, I’m reminded of those oversized balloon/mannequins that stand roadside, waving manically in the breeze, advertising this or that nearby business. At least, that’s how sepsis makes me feel – my plug’s been pulled, my batteries have been removed – so unlike my experience with my idiopathic polyneuropathy.

Weird stuff, this sepsis stuff.

Cheers!
Ray

Jump to this post

Ray - Trying to deal with PN is difficult enough. In particular, for many, maintaining balance is a serious issue. Any other impact on our health can definitely increase balance issues. Sepsis is very serious and can drain energy. I dealt with covid in early Feb and was a mess for about 10 days or so. My balance was not good. Take it slow, rebuild energy and keep the cane handy.

REPLY
1 reply
Debbie | @dbeshears1 | May 14 6:58am

Hi @ray666 -
First, despite the content of your post, I am very glad you’re back! For reasons non- health related, my recent schedule has only allowed me few windows of time to contribute here and sometimes can only skim the headlines. But always in the back of my mind, I’ve wondered “Where’s Ray?” I had hoped your partner had managed to get you out on long hikes, or a lengthy world cruise and that you took a vacation from your phone (as unlikely that last part sounds) I am sorry to learn that it’s the nagging fear I had, that you may have had a set-back.
I have no experience with sepsis, but my whole sudden PN coincided with the discovery of severe infection (kidney/UTI) that got me hospitalized and took everything away from my legs. I just advise you to do every single leg exercises you can while being grounded. You’ve prided yourself on having leg strength throughout your PN, and without it, we would never be surviving the awful PN wobbliness and balance obstacles we endure. I know I’m preaching to the choir - work with your doctor on making sure the necessary rest is accompanied with maximal PT!
I’m thinking of you dear buddy, and your partner, that you get this battle behind and restored back to your old self, which you’ll appreciate even more. Now that you’ve gotten your faculties back, I’m sure you use some of your time researching while on your butt and find energy. Some antibiotics are friendlier to folks with PN vs others. Make sure your Neuro reviews your meds for input.
Welcome back, and as @njed always tells us, Keep Moving (as much as doc allows)!

REPLY
2 replies
mfullbri | @mfullbri | May 14 7:55am

Hi Ray
Sorry to hear about the sepsis event! I am a 65 year old male who was diagnosed at the Mayo clinic with "characteristics" of SFN in both feet. Last fall I had a nasty fungus develop in my right ear. It took about 6 weeks working with an ENT specialist to resolve the fungus. Then I had mouth sores for about three weeks followed up with a bout with cellulitis that landed me in the hospital for a short stay. In all three cases the doctors could not determine the cause for each issue. Not sure but seems like my immune system was not working correctly. Unfortunately, I am still trying to figure out why my system is unable to fend off the infections. I have an appointment with a functional medicine doctor in August to hopefully figure out my system. Sorry I do not have any answers, just a similar experience. Best wishes with your recovery!
Mark

REPLY
1 reply
Ray Kemble | @ray666 | May 14 8:57am
In reply to @mfullbri "Hi Ray Sorry to hear about the sepsis event! I am a 65 year old male..." + (show)
@mfullbri

Hi Ray
Sorry to hear about the sepsis event! I am a 65 year old male who was diagnosed at the Mayo clinic with "characteristics" of SFN in both feet. Last fall I had a nasty fungus develop in my right ear. It took about 6 weeks working with an ENT specialist to resolve the fungus. Then I had mouth sores for about three weeks followed up with a bout with cellulitis that landed me in the hospital for a short stay. In all three cases the doctors could not determine the cause for each issue. Not sure but seems like my immune system was not working correctly. Unfortunately, I am still trying to figure out why my system is unable to fend off the infections. I have an appointment with a functional medicine doctor in August to hopefully figure out my system. Sorry I do not have any answers, just a similar experience. Best wishes with your recovery!
Mark

Jump to this post

Hi, Mark (@mfullbri)

Thanks for your post! Yes, this is quite the runaround we find ourselves in.

Yours is the second post that has mentioned "fungus" in conjunction with a sepsis event. The word has me curious.

This will have to be a short-ish reply only because I'm leaving (with a friend's help) to have a first meeting with yet another wound specialist at a local hospital. The wild infection I'd fought for the past two months and seemed to be in retreat suddenly appeared to have dug in its heels. A new tactic (i.e., antibiotic) may be needed.

I'm sorry to have to rush off, but I'm glad I found your post. I wish you well, Mark. I'll be watching for your posts.

Cheers!
Ray

REPLY
Ray Kemble | @ray666 | May 14 9:04am
In reply to @dbeshears1 "Hi @ray666 - First, despite the content of your post, I am very glad you’re back!..." + (show)
@dbeshears1

Hi @ray666 -
First, despite the content of your post, I am very glad you’re back! For reasons non- health related, my recent schedule has only allowed me few windows of time to contribute here and sometimes can only skim the headlines. But always in the back of my mind, I’ve wondered “Where’s Ray?” I had hoped your partner had managed to get you out on long hikes, or a lengthy world cruise and that you took a vacation from your phone (as unlikely that last part sounds) I am sorry to learn that it’s the nagging fear I had, that you may have had a set-back.
I have no experience with sepsis, but my whole sudden PN coincided with the discovery of severe infection (kidney/UTI) that got me hospitalized and took everything away from my legs. I just advise you to do every single leg exercises you can while being grounded. You’ve prided yourself on having leg strength throughout your PN, and without it, we would never be surviving the awful PN wobbliness and balance obstacles we endure. I know I’m preaching to the choir - work with your doctor on making sure the necessary rest is accompanied with maximal PT!
I’m thinking of you dear buddy, and your partner, that you get this battle behind and restored back to your old self, which you’ll appreciate even more. Now that you’ve gotten your faculties back, I’m sure you use some of your time researching while on your butt and find energy. Some antibiotics are friendlier to folks with PN vs others. Make sure your Neuro reviews your meds for input.
Welcome back, and as @njed always tells us, Keep Moving (as much as doc allows)!

Jump to this post

Debbie!!!! (@dbeshears1), I'm so glad to be in touch with you again! I'm dashing out the door (dashing? read: wobbling) for an appointment with a wound specialist at a local hospital. I'll read your message more properly when I return. For the moment, however, I want you to know how much it has cheered me to find your post! Til later … –Ray

REPLY
Ray Kemble | @ray666 | May 14 9:09am
In reply to @njed "Ray - Trying to deal with PN is difficult enough. In particular, for many, maintaining balance..." + (show)
@njed

Ray - Trying to deal with PN is difficult enough. In particular, for many, maintaining balance is a serious issue. Any other impact on our health can definitely increase balance issues. Sepsis is very serious and can drain energy. I dealt with covid in early Feb and was a mess for about 10 days or so. My balance was not good. Take it slow, rebuild energy and keep the cane handy.

Jump to this post

I'm taking all of my "sports equipment" with me this morning to meet with the wound specialist: cane, walker, other? I'm not taking any chances. 🙂

REPLY
slkanowitz | @slkanowitz | May 15 11:28pm

Hi Ray and welcome back! Wow, you have been through the wringer and I am so glad you are recovering. I am a fellow Coloradoan but moved to AZ 1 year ago. Also have PN and have had 2 bouts with sepsis. First caused by pneumonia, the second last fall caused by a post operative infection 3 days after having a port put in chest for IVIG therapy. My PN is from CIDP, autoimmune. I don’t think there’s any direct connection but do think there’s an indirect connection. The PN causes numbness so it is easy to nick, cut, or abrade your skin without realizing it. Any puncture or disruption of the skin can allow germs to enter, then enter your bloodstream. You may not feel the pain from the infection because of the numbness which allows it to get worse before you realize it. It is a good habit to check your toes and feet every night before bed to see any cuts or suspicious redness or swelling. Thoroughly clean and apply antibiotic ointment to any skin break no matter how small. Staph and strept are always on the skin and cause most cases of cellulitis and subsequent sepsis from skin injuries. Many with autoimmune PN are also immunosuppressed, making infection more likely. Our immune systems are weaker as we age so we must be extra vigilant. Glad you’re better!

REPLY
1 reply
Ray Kemble | @ray666 | May 16 11:23am
In reply to @slkanowitz "Hi Ray and welcome back! Wow, you have been through the wringer and I am so..." + (show)
@slkanowitz

Hi Ray and welcome back! Wow, you have been through the wringer and I am so glad you are recovering. I am a fellow Coloradoan but moved to AZ 1 year ago. Also have PN and have had 2 bouts with sepsis. First caused by pneumonia, the second last fall caused by a post operative infection 3 days after having a port put in chest for IVIG therapy. My PN is from CIDP, autoimmune. I don’t think there’s any direct connection but do think there’s an indirect connection. The PN causes numbness so it is easy to nick, cut, or abrade your skin without realizing it. Any puncture or disruption of the skin can allow germs to enter, then enter your bloodstream. You may not feel the pain from the infection because of the numbness which allows it to get worse before you realize it. It is a good habit to check your toes and feet every night before bed to see any cuts or suspicious redness or swelling. Thoroughly clean and apply antibiotic ointment to any skin break no matter how small. Staph and strept are always on the skin and cause most cases of cellulitis and subsequent sepsis from skin injuries. Many with autoimmune PN are also immunosuppressed, making infection more likely. Our immune systems are weaker as we age so we must be extra vigilant. Glad you’re better!

Jump to this post

Good morning, @slkanowitz

Thank you for your message and encouragement. And thank you, especially, for your wise words! I’m forever in need of reminding to double-check the bottoms of my feet.

I’d done long-distance running for years and grew accustomed to believing my “toughened” feet were impervious to everything. Embarrassingly, it took two neurologists and two EMGs to get it through my thick skull that there were vicious things out there, like sepsis, that would have no trouble at all bypassing my so-called “toughened” feet.

I can easily accept that my current struggle with sepsis is the result of a runner’s ignorance.

Let’s all recover together!

Cheers!
Ray

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