Sudden onset neuropathy and scared

Janet thank you for sharing this. I too was in great health and very active with dancing and hiking, snorkeling, kayaking... and then out of the blue I had tingling in my left foot. Which in seven short months has spread to all my extremities, shortness of breath and feeling wobbly (kind of like in the past just in January when I would stand on a Bosu ball at the gym to do my weights). I was diagnosed with small fiber polyneuropathy, probably idiopathic. So, having worked for 10 years as the director of social work in a physical rehab hospital - you guessed it, my profession has me in overdrive thinking "I need to get a ranch house before it gets worse. I need to get a grab bar for the shower - I'll find a fashionable one. I wonder where I can find a fun fashionable cane." And "oh no - what if it's autonomic! And what if my neurologist didn't get this diagnosis right?" And I am awake at night worrying. Of course I'm not even physically at that point yet, or maybe never! So my question is - how do I find a meditation instructor? And is there a particular type of meditation that I should practice?

Janet thank you for sharing this. I too was in great health and very active with dancing and hiking, snorkeling, kayaking... and then out of the blue I had tingling in my left foot. Which in seven short months has spread to all my extremities, shortness of breath and feeling wobbly (kind of like in the past just in January when I would stand on a Bosu ball at the gym to do my weights). I was diagnosed with small fiber polyneuropathy, probably idiopathic. So, having worked for 10 years as the director of social work in a physical rehab hospital - you guessed it, my profession has me in overdrive thinking "I need to get a ranch house before it gets worse. I need to get a grab bar for the shower - I'll find a fashionable one. I wonder where I can find a fun fashionable cane." And "oh no - what if it's autonomic! And what if my neurologist didn't get this diagnosis right?" And I am awake at night worrying. Of course I'm not even physically at that point yet, or maybe never! So my question is - how do I find a meditation instructor? And is there a particular type of meditation that I should practice?

It’s very smart to start thinking about the future because the sad truth is that the neuropathy will probably get worse as the years go by and what you can do now to prepare for that will be easier to accomplish.
I am a retired OT and also worked in rehab. People like us can’t escape what we know about what possible future disability can require. My dream house before OT school was an old Victorian with a big front porch, we live in a ranch house with one step to enter, the tub and shower stall now have grab bars and a hand-held shower head, the toilets are high ones, the washer/dryer are on the first floor level, and I have a very stylish blue print collapsible cane (Amazon). The shower chair, bed assist rail, and rollater my mother used are up in the attic. I’ve also gradually, but persistently, kept up with small repairs and saved for large ones, emptied the basement, decluttered closets, etc to prepare for if/when the house needs to be sold. My motivation is to do what I can to “get ready” for my future if/when I am less physically able.
I find doing these things to prepare make me feel settled and less stressed, there isn’t a yawning chasm ahead to feel overwhelmed by, more of an “I got this” approach. In the beginning, after diagnosis, I did a ton of research, pursued top flight Neuro and Ortho MDs, did all the testing, but it is true that you do have to learn to live with it, do what you can every day, try to not dwell on what’s difficult now, do your best with what you’ve got each particular day. We Connect friends are a great resource and comfort.

Hi Robin:

I am concerned that small fiber PN would cause the shortness of breath and imbalance that you are feeling - and in such a short time. It can impact autonomic, but there are other autoimmune diseases that impact a person suddenly. I would absolutely get a second opinion about the diagnosis.

My neuropathy came on suddenly but it has progressed slowly and it has been 3 years. Make sure you've ruled out all else. Good luck.

Betty

Mine also came on all of a sudden 4 years ago (I am 66). First in the left foot, then right foot a year later.
So far numbness only and neurologists call it mild PN. Neuropathy is only in feet.
As everyone here knows, it is really hard to track down a cause.
Possibilities with me are:
1. Pre-diabetic, but A1C is within range and no one thinks this is a cause.
2. Low B12 but have been taking shots for years. This could have been a cause, but my B12 levels are fine now.
3. I do have a mild back issue. No one thinks this is a cause for sure, but it might be. MRI impression is below. If anyone has thoughts on that, would appreciate it. Seeing a neuro-surgeon on that soon.
I take R Liopic Acid, B1, B12, Magnesium but they seem to have no effect. I walk 2 hours a day and walking makes feet feel a bit better. I can definitely live with the way they are now, but worry about it getting worse and they are very gradually getting worse (more numb, occasional pain).
BTW I know this is mild and others are really suffering.

From MRI results:
IMPRESSION:
Mild multilevel degenerative spondyloarthropathy of the lumbar spine as described in detail above. Most notably, there are narrowings of the subarticualar zone at L2-L3 and L4-L5. Mile neural forming narrowings at L3-L4 and L4-L5. No overt spinal canal stenosis.

Mine also came on all of a sudden 4 years ago (I am 66). First in the left foot, then right foot a year later.
So far numbness only and neurologists call it mild PN. Neuropathy is only in feet.
As everyone here knows, it is really hard to track down a cause.
Possibilities with me are:
1. Pre-diabetic, but A1C is within range and no one thinks this is a cause.
2. Low B12 but have been taking shots for years. This could have been a cause, but my B12 levels are fine now.
3. I do have a mild back issue. No one thinks this is a cause for sure, but it might be. MRI impression is below. If anyone has thoughts on that, would appreciate it. Seeing a neuro-surgeon on that soon.
I take R Liopic Acid, B1, B12, Magnesium but they seem to have no effect. I walk 2 hours a day and walking makes feet feel a bit better. I can definitely live with the way they are now, but worry about it getting worse and they are very gradually getting worse (more numb, occasional pain).
BTW I know this is mild and others are really suffering.

From MRI results:
IMPRESSION:
Mild multilevel degenerative spondyloarthropathy of the lumbar spine as described in detail above. Most notably, there are narrowings of the subarticualar zone at L2-L3 and L4-L5. Mile neural forming narrowings at L3-L4 and L4-L5. No overt spinal canal stenosis.

I was prediabetic with A1C of 7.1 at most. Still I got neuropathy. Doctors at first were unwilling to place the blame on the neuropathy for this, but one neurologist after doing skin biopsies noted that the pattern seemed to be indicative of diabetic neuropathy. I found a paper noting that prediabetes may well cause neuropathy. I lost weight and got my A1C to around 5.8. I should say that I had glucose intolerance which meant that blood sugar levels stayed constant over time rather than just going down. They were not a bell curve as they should have been. My dad and granddad were diabetics so I had a proclivity. It makes sense that over the years the higher blood sugars in my system due to glucose intolerance, while not very high, would have still have had a negative effect on me. The neuropathy is progressing but it is manageable with lyrica.

Neuropathy is one of those fields which is new and little is known. Symptoms are treated but causes are so unknown in many cases. So helpful. Uuuugggh. I just try to be as healthy as possible and take it from there. New symptoms continue to emerge so I continue to see docs about causes, etc. Keep investigating and stay healthy AND enjoy life as much as possible. Thank you for sharing. This site has been so helpful in making me feel not so alone.

Thanks for that info and yes to "causes are so unknown in many cases".
My A1C ranges between 5.3 and 5.5, so it's on the high end of normal but still normal. But my fasting glucose ranges 96-105 and 99 is the upper end of normal so that's a bit high.
So yeah, I am not convinced glucose is not the issue.
I am 30 pounds overweight so am trying to get that down to see if it helps.