Neuropathy Symptoms

Good evening @jeffkboyce, I have just re-read your post about neuropathy symptoms. And I am having a good evening so let's see what we can share. First of all, I took the opportunity to read your profile and review your previous posts. It does seem like you have had more than recent and sudden neurological symptoms that can be categorized as neuropathic. I am trying to remember what finally took me to a neurologist and how long it took before I was given a diagnosis of SFN, small fiber neuropathy.

Like you, I was a very active trekker, walking anywhere from 3 to 15 miles a day in various parts of the world with a group of friends several times a year for at least 10 years. I also lived for 23 years at 6,000 feet in the mountains which did a lot for my cardiovascular system. My neuropathy was diagnosed within a reasonably short time by a skin punch biopsy on my ankle after the symptoms began. It was actually my orthopedic surgeon who recognized the symptoms and led the way for me. First, he sent me to a rheumatologist. She gave me a huge dose of Vitamin D and sent me back. Then he sent me to a Neurologist and he was the one who watched me walk, did some EMG tests ordered an MRI, and reviewed my history of 14 orthopedic surgeries that started when I was 13 years old.

So although the cause was "trauma" due to accidents and surgeries, the symptoms didn't accumulate to be recognizable as SFN until the tingles began in my feet and hands. I do remember that he pulled his chair over close to me and introduced the concept of neuropathy very gently. Now I know why. And now, I can literally watch the progression of this "nerve" disease sort of take over my life.

Within the last year, I have revisited the neurology team as they attempt to understand in what direction I may be headed. It seems that leg weakness has begun which can be attributed to radiculopathy or what is called "pinched nerves" as a result of the injuries and surgeries I have accumulated at the age of 81.

So it looks like you are seeking a timely diagnosis and some understanding about where you are headed. I hope this neuropathy "autobiography" of mine fills in some of the missing links and individual wonderments. I would appreciate learning about your findings and discoveries. I am here on Connect to help folks like both of us.

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

@jeffkboyce this really struck me:
"I have spinal stenosis and I have been exercising on stationary bike at pretty high resistance and hiking / walking lifting weights"

I have stenosis and don't do anything at all that involves resistance. I cannot imagine doing the stationary bike with resistance, or lifting weights. I do walk.

I am hoping that if you stop those activities, things will get better.

At times I make a mistake and lift something I shouldn't and I do get sensations in feet and hands. Luckily they go away in a few days.

I have baseline paresthesias but the sensations from stenosis are different. Noone ever figured out my sudden paresthesias (burning tingling in arms and legs and face) but I did test positive for Lyme.

See a neurologist who knows something about small fiber Neuropathy. It’s a simple test consisting of small skin biopsies. The EMG won’t properly diagnose SNF. I’ve been there. The EMG is painful!!!!! It proved nothing. But that was me. It took the 3rd neurologist to even consider trying the skin biopsy. Unfortunately for me, it proved positive. There are many types of peripheral neuropathy. Find a neurologist with some SNF background. Good luck.

Thanks a lot Chris! I appreciate you taking time read my note and look at my posting history. Indeed my tent is getting older I need to expect that changes are going to occur. 😀 Yes I have had some strange sensations on my knee and I have BFS for sure. I had some very very mild tingling that after an L4 nerve root injection resolved and it hasn’t been much of issue since. These particular foot issues just started one day, are different and more pronounced. I have had very mild glucose increase post statin but I read for neuropathy to occur in that case you need to be diabetic and it comes on slowly - not suddenly. I do have a back issue which was what I first suspected to be the culprit- which if true all of the exercises I was doing built up aggregation and I progressed my condition or created some flare. Previously though it would improve with rest and then ultimately it resolved. It really isn’t I am seeing some slight improvement but not alot. What puzzles me is the ortho was pretty much a wait and see let’s do another injection and see what improves what doesn’t etc. In this case I am 2 months in with no answers. So I am driving the process now to get to a diagnosis. The EMG test should provide some clues? I am so glad you are having a very good day and thanks again!

Total lesson learned for sure and I have stopped. I have modified my workouts and am asking myself am I practicing holistic health or am I chasing an idol? On my case it was the latter. Not that pushing yourself is bad just for me I need to remind myself I am not 35 and I have conditions. My fitness level improved so much in order to get my heart rate up I needed to increase resistance and I didn’t have foot straps. Previously I injured myself this way but it was pretty bad pain. This isn’t pain just odd sensation- thank you for reading my post.

I walk, and do tai chi/quigong...and want to start swimming. It is true we need to keep moving!

I also have osteoporosis but my main neuro symptoms from making mistakes are from the spinal stenosis.

Your efforts to be fit are admirable but glad you stopped!!

The oddest sensation I have is buzzing on my left foot which is tied to a muscle twitch in my calf and insole. I was diagnosed with BFS and I have been told this sensation is very common among BFS sufferers. It is transient and resolves after awhile when I stand still. Is this a common neuropathy symptom? This is what I first noticed one morning along with tingling. It was with me for a few days then went away tjen I went back to my workouts but less frequency (still high intensity) then it came back and has been with me for 2 months. The buzzing seems to be getting a little better the tingling in my right foot goes away if I lift my leg in certain positions but is enhanced if I do mild nerve flossing exercises

They are fun aren’t they? The last one in 2021 was negative for PN. We‘ll see what this next one tells me.

Hi…remember the emg can only detect large fiber neuropathy…not small fiber. A punch biopsy is often used to detect small fiber neuropathy.

Yes thanks! I finally am getting established with a good local primary so I will talk to him about getting that test as well. I have tried to get into a foot doc but no avail …. No one calls back or they are months and months backed up. I feel like I now live in a third world country. We put our home up for sale and hope to move to Tucson 😀