1. < Neuropathy

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

Posted by Ray Kemble @ray666, May 12, 2024

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 25, 2024

" Aahhh, the challenges of aging! It is SO much more comforting with a community of friends with whom to identify!!

Close friends who know I don't pay much heed to lists will often tease me: "Tell the truth, Ray. The real reason you don't make lists is so there'll be no way for you to know all the things you have forgotten." 🙂

Ray

REPLY
tntwo99 | @tntwo99 | Apr 8 4:59am

Hi Ray
I am new here but experienced Sepsis and septic Shock in 2017. I have had PN since 2001 following chemotherapy for breast cancer. The first question my oncologist asked after my treatments was, "How are your feet"? Since then it was total numbness in my feet and then up to my shins. No pain just constant numbness. I was Dx with T2 diabetes since 1996 but well controlled. In 2005, a doctor decided I needed to be on insulin but without much guidance and my well-controlled diabetes took a turn. The circulation in my legs got bad. I kept getting small bouts of cellulitis and rusting from pooled blood in my shins. In 2010 I had double knee replacement surgery. The PN got worse after that with pain in my heels. Then in May 2017 on a Friday, I woke feeling extremely cold. I had a cup of tea and went back to bed just wanting to sleep and be warm. I woke up the next morning with pain in the side of my leg. I went back to sleep, saying no to my husband asking if I wanted something to eat. I woke up Sunday afternoon with severe pain in my knee and unable to stand. Hubby says we need to go to the ER. I told him I won't be able to get in the car. He called 911. I couldn't even put clothes on it hurt so badly. They took me straight to the hospital rather than our local ER and gave me a shot of fentanyl but it didn't help at all. The ER said I had an infection in my leg and decided to keep me there. I don't remember anything much after that other than being transferred to the Med Center. Two weeks later I came back from wherever I had landed and found out that I had surgery to replace the plastic part of my knee, 2 Transesophageal echoes, numerous other tests, and they had informed my family that I wasn't going to make it.
And this was all from a small bit of cellulitis and the natural strep bacteria that occurs on everybody's skin. They couldn't figure out what was wrong with me as I didn't have a fever and wasn't showing textbook symptoms of sepsis. Only my BP was dropping. The infection crossed the blood-brain barrier and has given me permanent ataxia and incontinence issues. I also have an issue with kinesthesia. I startle quite easily now. I was in a skilled nursing facility for 2 months learning how to be me again. Learning to walk, control of my hand movements and severe lymphedema. I have had Sepsis two more times in different areas since then and I am on lifetime antibiotics.antibiotics.

REPLY
2 replies
Ray Kemble | @ray666 | Apr 8 11:05am
In reply to @tntwo99 "Hi Ray I am new here but experienced Sepsis and septic Shock in 2017. I have..." + (show)
@tntwo99

Hi Ray
I am new here but experienced Sepsis and septic Shock in 2017. I have had PN since 2001 following chemotherapy for breast cancer. The first question my oncologist asked after my treatments was, "How are your feet"? Since then it was total numbness in my feet and then up to my shins. No pain just constant numbness. I was Dx with T2 diabetes since 1996 but well controlled. In 2005, a doctor decided I needed to be on insulin but without much guidance and my well-controlled diabetes took a turn. The circulation in my legs got bad. I kept getting small bouts of cellulitis and rusting from pooled blood in my shins. In 2010 I had double knee replacement surgery. The PN got worse after that with pain in my heels. Then in May 2017 on a Friday, I woke feeling extremely cold. I had a cup of tea and went back to bed just wanting to sleep and be warm. I woke up the next morning with pain in the side of my leg. I went back to sleep, saying no to my husband asking if I wanted something to eat. I woke up Sunday afternoon with severe pain in my knee and unable to stand. Hubby says we need to go to the ER. I told him I won't be able to get in the car. He called 911. I couldn't even put clothes on it hurt so badly. They took me straight to the hospital rather than our local ER and gave me a shot of fentanyl but it didn't help at all. The ER said I had an infection in my leg and decided to keep me there. I don't remember anything much after that other than being transferred to the Med Center. Two weeks later I came back from wherever I had landed and found out that I had surgery to replace the plastic part of my knee, 2 Transesophageal echoes, numerous other tests, and they had informed my family that I wasn't going to make it.
And this was all from a small bit of cellulitis and the natural strep bacteria that occurs on everybody's skin. They couldn't figure out what was wrong with me as I didn't have a fever and wasn't showing textbook symptoms of sepsis. Only my BP was dropping. The infection crossed the blood-brain barrier and has given me permanent ataxia and incontinence issues. I also have an issue with kinesthesia. I startle quite easily now. I was in a skilled nursing facility for 2 months learning how to be me again. Learning to walk, control of my hand movements and severe lymphedema. I have had Sepsis two more times in different areas since then and I am on lifetime antibiotics.antibiotics.

Jump to this post

Good morning, tntwo99 (@tntwo99)

Thank you for your post! I definitely want to talk with you about your experience. From what I'm hearing, many who begin with sepsis end up developing PN, and vice versa. I'll have to cut this short this morning as my partner and I are finishing a crosstown move today (she's moving in with me) and we've a full day ahead of us. But I've saved your post. I'll get back to you, if not later today, then almost certainly tomorrow.

Stay strong!
Ray (@ray666)

REPLY
Ray Kemble | @ray666 | Apr 12 1:05pm
In reply to @tntwo99 "Hi Ray I am new here but experienced Sepsis and septic Shock in 2017. I have..." + (show)
@tntwo99

Hi Ray
I am new here but experienced Sepsis and septic Shock in 2017. I have had PN since 2001 following chemotherapy for breast cancer. The first question my oncologist asked after my treatments was, "How are your feet"? Since then it was total numbness in my feet and then up to my shins. No pain just constant numbness. I was Dx with T2 diabetes since 1996 but well controlled. In 2005, a doctor decided I needed to be on insulin but without much guidance and my well-controlled diabetes took a turn. The circulation in my legs got bad. I kept getting small bouts of cellulitis and rusting from pooled blood in my shins. In 2010 I had double knee replacement surgery. The PN got worse after that with pain in my heels. Then in May 2017 on a Friday, I woke feeling extremely cold. I had a cup of tea and went back to bed just wanting to sleep and be warm. I woke up the next morning with pain in the side of my leg. I went back to sleep, saying no to my husband asking if I wanted something to eat. I woke up Sunday afternoon with severe pain in my knee and unable to stand. Hubby says we need to go to the ER. I told him I won't be able to get in the car. He called 911. I couldn't even put clothes on it hurt so badly. They took me straight to the hospital rather than our local ER and gave me a shot of fentanyl but it didn't help at all. The ER said I had an infection in my leg and decided to keep me there. I don't remember anything much after that other than being transferred to the Med Center. Two weeks later I came back from wherever I had landed and found out that I had surgery to replace the plastic part of my knee, 2 Transesophageal echoes, numerous other tests, and they had informed my family that I wasn't going to make it.
And this was all from a small bit of cellulitis and the natural strep bacteria that occurs on everybody's skin. They couldn't figure out what was wrong with me as I didn't have a fever and wasn't showing textbook symptoms of sepsis. Only my BP was dropping. The infection crossed the blood-brain barrier and has given me permanent ataxia and incontinence issues. I also have an issue with kinesthesia. I startle quite easily now. I was in a skilled nursing facility for 2 months learning how to be me again. Learning to walk, control of my hand movements and severe lymphedema. I have had Sepsis two more times in different areas since then and I am on lifetime antibiotics.antibiotics.

Jump to this post

Good afternoon, tntwo99 (@tntwo99)

There is so much I would like to say about sepsis and PN combined and so many things I would like to ask you about your experience. Unfortunately my partner and I still in the middle of moving and I'm going to have to run along once again. More boxes to move! Briefly, however, from all you've told me, it seems your experience was far more frightening than mine. I knew nothing about sepsis when I was taken to the hospital. I thought I'd be in the ER, oh, two, three hours, and sent home. That's how naive I was. I'd not idea of the seriousness of my condition. I couldn't understand why the doctors, nurses, and other clinicians were giving me all that attention. Why all the hub-bub? I was wondering. Why all the deeply furrowed brows? It wasn't until a youngish doctor, who introduced himself as an infectious disease doctor and said I was being transferred to the "fourth floor" (the "fourth floor"? what was all that about?) that it dawned on me that I might have something serious. That began my three-week stay in the hospital, followed by another three-week stay in a rehabilitation facility, followed by many months of at-home home-health rehabilitation.

Uh oh, my partner has our car fully loaded. I'm being paged. 🙂 It's time for me to help with yet another move.

Here's hoping all is well with you!
Ray (@ray666)

REPLY
tntwo99 | @tntwo99 | Apr 14 4:15am

Reading all of these suggestions that work and don't work, I think I will save myself the trouble and just keep using my lidocaine roll-on lorion. If it gets really bad I will use the lidocaine patches. Both work well enough for me to fall asleep or stay asleep without the feet jumping from electric shocks.
I also have used Diclofenac gel (Voltaren), sparingly, when I think it is going to be a really tough night. If you can get a prescription if your insurance covers it, it seems to be a bit thicker, larger size, and less expensive.

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