Idiopathic progression?
 

Hi everyone,

I'm a young peripheral neuropathy sufferer and after extensive tests over the last 10 months, the cause still remains unknown so it's idiopathic to date. While my symptoms are currently manageable and mostly consist of random stinging, burning, buzzing and twitching sensations in my legs and sometimes arms, I'm concerned about the progression being 31.

Since my symptoms began in my feet and do seem to follow the stocking effect, I'm wondering what happens once it gets to your trunk? So far just my sensory nerves seem to be affected, aside from maybe a bit of the motor nerves with the twitching. Is it possible that once the sensory nerves have all been affected the autonomic next?

My neuropathy was confirmed after my Neuro completed a NCS that had showed slow nerve response and demyelination of the nerves. He did a repeat 3 months later with the exact same results--so I guess, for now, it's good there hasn't been progression.

If anyone also wants to weigh in on their idiopathic sensory progression I would greatly appreciate it :) I know everyone is different but sometimes the unknown of the possible progression is the toughest part for me.

Thanks! :)

Hi Sara
 

It is so variable for people, depending on the cause, which of course you don't know!

For me, I first noticed mild numbness/tingling in my feet left greater than right 13 yrs ago when I was about 32. My first emg showed sural nerve (sensory)slowing in my left lower extremity. Over the years, I've had increased in intensity of numbness, tingling, burning, zapping. I have some motor nerve involvement on my left foot, affecting my outer 2 toes, this happened 2 yrs ago & may or may not have been connected to an issue with my lower spine I had fixed. Muscle twitching like crazy last several yrs. Within the last year I've had squeezing type pain in my abdomen, that I think now is sensory. Everything comes and goes everyday & varies in intensity. I've not had the skin punch biopsy for SFN because I obviously have large/small fiber involvement.

Autonomic issues with increased heart rate, low blood pressure, headaches showed up about 7 yrs after my first sensory issues. I've yet to get a full autonomic workup. I am looking at doing this soon, as well as trying to find a doctor in my area that knows more about neuropathy that isn't diabetic.

Welcome and I am sorry you are beginning this journey. People do have milder courses of this with slower progression. Very healthy diet low in sugar, moderate exercise can help. Currently I am reading Dr. Terry Wahls, "The Wahls Protocol,"who has managed her MS through diet with great results.

It is tough for anyone to predict what will happen in your case, but I don't believe it is the normal progression to move from sensor to autonomic. The neurologists at Mayo Clinic diagnosed me with probable small fiber sensory neuropathy and they told me that this is not normally life-threatening, which of course autonomic PN can be. Do you best to stay as healthy as possible to prevent the progression. Look into 'alternative' forms of healing and you may be able to reverse it.
Ron

Hi,
I was first affected at 32. I am 42 now. Mine was also small nerves and yes I twitched for 1.5 years and it went away eventually.
Mine progressed to cover my whole body, but did not involve significant autonomic involvement. So far it still does not.
I am not sure it was idiopathic. It followed a respitory illness with h. Pylori infection and I also had undiagnosed thyroid disease.

I have had a few bad exacerbation over the 10 years following a whiplash incident, inhaling paint fumes when my house was painted and after antibiotic use.

I urge you not to think of the worse but believe you will eventually get better. You will save yourself so much stress. Worrying about getting worse caused me to develop anxiety/panic disorder which then led to agoraphobia. Others develop depression. I never got worse, but now I still suffer from anxiety.

So that's my story hope it helps a bit. Aussie

Hi Sara,

Sorry you have to be here, but hopefully you'll find some comfort in communicating with fellow sufferers.

My journey has been different than most it seems, and I can't even be sure what I've experienced is progression as I never got an SFN diagnosis 30 years ago. I won't go into all the gory details, but here's the gist of it...

Back in the mid-80s when I was in my early 20s, I started experiencing bizarre neurological sensations in my left left leg. It varied from buzzing to pain, but was always accompanied by twitching. Doctors could find nothing back then, and my neuro called it "nerve root irritation."

At one point over the past decade, I ran across the term "benign fasciculation syndrome," and self-diagnosed myself with that.

Late in 2013, however, things took a sudden turn for the worst. Three different things happened with me medically that could have been the trigger, or none of them may have been involved at all. I won't go into that. What happened was that the neuro symptoms jumped to my right leg, and I started feeling milder symptoms all over. I also started experience the classic SFN burning sensation in my legs and feet, and also the zapping nerve pain. Sleep was very difficult.

My all-over sensations are ones of a buzzing that abates when when I move (i.e, engage my motor nerves), and I also have these bizarre "rushes" of sensation in various body parts at different times. My left side is more affected than my right.

If what I had in the 80s is indeed part of this, it took almost 30 years to progress. The only definitive progression I can cite since Nov. 2013 is that I have the classic SFN sensation that I've seen described as my socks being bunched up between my toes on my right foot. I still have sensation in those toes, I'm just feeling something that's not there. That developed about 6 months ago.

The one suggestion I have is to look into alpha lipoic acid as a supplement. My symptoms dialed back a notch once I started taking it. The zapping nerve pain isn't that big of a problem anymore, although I still have the plethora of other symptoms.

Jane

What vitamins/medications/etc (ala) are you taking?

I've added B12, many Omegas into my diet, alpha lipoid acid and vitamin D. I'm trying to get pregnant so now I will move to prenatal vitamins. I've also done acupuncture and am meeting with a naturopath as well.

Hi there, thanks for your reply. I have taken alpha lipoid acid but am dialing back on it as we're trying for a baby.

Don't take this the wrong way but you getting pregnant would be fantastic!! There's nothing more inspiring/uplifting than good news stories on this forum such as this IMO. Best of luck!!!