How fast has your PN progressed?
 

My first numbness feelings showed up on the tips of my toes almost exactly one year ago.

In the last 5 weeks, it's gone from foot pain and that "fuzzy socks feeling" at my ankle to foot pain (largely handled by gabapentin) to the fuzzy socks feeling almost all the way to my knee. Almost 12 inches of "progression" in not much more than a month.

How does this compare to you?

And, my earlier question, does it ever stop?

Thanks,

Ed

I'd say that is pretty rapid...
 

I'd get tested for heavy metal toxicity.

Also autoimmune issues.

Anything in the hands?

When I had my severe PN early at 30, I had considerable hand issues as well.

Did you have B12 tested? Do you know the result? Do not accept "normal" from the doctor without the numbers. If they are
below 500, you need B12 ASAP. In fact I would be doing it NOW.

I agree with Mrs. D.
 

My 'toes' were numb when I first got a referral to a neuro. However I ended up in a hospital with a neuro progression NO ONE wants to have the week before that neuro appointment!
I would call my GP NOW and if he'd referred you to a neuro do same and they will likely say 'Go to the ER'....not fun, but this IS a Monday? Because of that you might be squished into an emergency appt tomorrow. CALL NOW! Don't DELAY! [My events occured on a Wed!]
Why? I had to spend 14 hours in an ER before I was 'seen', then the resident on call took another 4 hours to tell me he'd found 'neuropathy' on the internet! In a hospital for three days, and then 'kicked' out, could hardly stand, walk or anything yet..deemed safe to be on my own. NOT!
This is not to scare you, but to seriously URGE you to go see those KEY docs NOW! Don't put it off until tomorrow. Please! And :hug:'s in the meantime, it's a scary thing, but with care...good care, it is not at all. Get that care! - j

I appreciate the suggestions, but I'm mostly asking about how quickly others PN had progressed in order to form a comparison with my own.

But, to answer the questions...

There's nothing with the hands (yet). My understanding is that neuropathies are length dependent and that hands don't typically get involved until there's leg issues almost to the top of you thigh (typically where your fingers tips are when you're standing up.)

I've had most tests done over the past number of months including autoimmune, metals, and B12. All the tests, thus far, have been "normal." But I don't have the tests in front of me, so I can't quote the B12 numbers. I'm seeing her again on Tuesday next week and will get a copy of all of my results so that I can look at them in light of what others are saying.

I've went ahead and ordered Methyl B12 based on what others have suggested. It can't hurt.

The rests of Liza Jane re: Lyme's tests -- originally negative and now positive from Igenix -- may be interesting. I was test for Lymes many months ago, but not by Igenix.

Thanks,

Ed

What was your eventual diagnosis?

How did they correct this rapid onset, in you case?

Thanks,

Ed

the way I look at it....
 

If you have a toxin or metabolic problem...then PN will be not localized to the feet and legs.

Localization should be looked at as coming from the back.
Or circulation. If you smoke, I'd be looking at circulation.

Diabetic PN does start in the feet. But other causes/triggers do not localize just there.

My PN was thyroid induced early... and it was not only in the feet.

I don't smoke, but I am overweight and have been for years. Although the basic glucose tests came back normal, after reading things on this board and elsewhere, I intend to ask for tests for impaired glucose tolerance -- i.e. "pre-diabetes". There are some reports on the internet that as many as 40% of those people originally labeled "idiopathic" turned out to have IGT.

We'll see...

Onset was semi-fast....
 

A month from the toes being affected to the ankles and hands [when I went to the ER] up to the knees and the elbows. while waiting...
Took me a year and 3 neuros to get the diagnosis of CIDP [Chronic Inflammatory Demeyelinating Polyneuropathy] After that diagnosis further progression was slowed to less than the movements of tectonic plates? Treatment for this is expensive as in $$$$$ mega, but, I'm lucky with good insurance? Before then tho it was downright scary. BUT....Many issues can come into play and tests are extensive! You will be MRI'ed, CT'ed and blood tested out the wazoo. On the stickies above there is a reference to that and many other neuro issues that can cause your problems.
http://neuromuscular.wustl.edu/alfindex.htm This index cites ALL possibilities, and it can be mind-boggling? It takes Time and copies of your own test results in-hand to even begin to try and learn about what all is going on with your body. I do know different states have different rules about YOU the patient getting copies, well, just ask your doc for copies of the tests of all sorts and YOU do some research on them! You mite be surprised about what all you can find out about yourself in this quarter. Test results are the most useful tool to help YOU find out what all is going on! That is my most HUMBLE opinion?

OK Did you call your docs???? Say yes or no...and why.
In the meantime don't panic - good things for the interim? - j

Mine started in my hands, with ulnar neuropathy 10 yrs ago. About 2 years after my hands, then it started in my feet with numb toes, burning feet. It took me 6 yrs to figure out what was going on, and I started taking B12, which has made a huge difference. My neuropathy happened because of celiac/gluten intolerance, and going years without a diagnosis. Ten years after the diagnosis of carpal tunnel, my toes do not go numb, my feet don't burn too often, my hands have improved some, and I am not on pain meds. With luck, you can slow the progression, sometimes stop it.

a fasting insulin
 

Checking fasting insulin (as well as glucose) is often very
revealing of insulin resistance.

When people have insulin resistance often the fasting is glucose is normal or even a bit low, until it gets bad enough for
pre-diabetes to appear.

So checking the fasting insulin level is useful. (do not engage in any exercise before this is taken, as it will skew the result).

If elevated then you can start with supplements that help insulin work. And there are many of those that do work.

My neuropathy started in my feet more than 15 years ago, but was mis-diagnosed by my HMO GP for years. He thought it was either being on my feet at work, then 'all in your head', then sent me to a podiatrist who suggested orthopedic shoes and inserts.
It was dx'd in 1999 when I was hospitalized for pancreatitis.
Since then, my current PCP, & my neuro & I, have worked together to decrease progression and aleviate pain- thru meds and supplements. My EMG & NCV in July, showed little to no significant difference in tests done 4 yrs ago.
I think that supplimenting B12 has been the most effective for me.

I didn't even know my feet were numb.

Six years later, it is in my arms and autonomic nervous system.

That said, I had Lyme and have Sjogrens, oh and got whacked by a truck head on at 55mph.

It is hard to compare from one person to the next.

IVIG helped my numbness and 'falling asleep sensation' tremendously.

One year and 10 months in I have had little progression - it all came on in an onslaught, pins, needles, burning, weakness etc in hands and feet and now it is pretty much the same with occasional flare ups of different symptoms and occasional periods where it feels slightly better - but nothing substantially worse. Dr says it will get worse but doesn't know when. IVIG may or may not be helping, hard to tell. It's idiopathic. Basically I think there is really no way to tell. All you can do is the do the best you can to take care of yourself - lower your stress, get rest, try to eat healthy, try different meds/treatments etc - and cross your fingers!


QUOTE=cyclelops;414173]I didn't even know my feet were numb.

Six years later, it is in my arms and autonomic nervous system.

That said, I had Lyme and have Sjogrens, oh and got whacked by a truck head on at 55mph.

It is hard to compare from one person to the next.

IVIG helped my numbness and 'falling asleep sensation' tremendously.[/QUOTE]

I've had neuropathy for three years. it began on the top of my legs and reproductive area and it spread in about three months to my calves and feet. I was given prednisone and then IVIG. It hasn¡'t progressed eversince.

Objectively speaking it has improved a little. For example, when crossing my legs i could feel that my foot being pulled down, like a super gravity force or feeling of it being heavy. That i don't experience anymore. i also remember i used to describe my pain like a long worm or a snake slithering in my calves. Now i don't experience that very much, and it feels more like little bugs.

I have been taking a lot of supplements, also one recommended by a mexican doctor who discovered an unknown mechanism in the human body.

I guess the combination of meds and supplements has enabled me to heal.

I forgot to say this before, in the beginning, when my neuropathy was diagnosed. I had EMG and NVC and they showed nerve damage, after IVIG and a hyperbaric medicine treatment i took the same tests and they showed no damage. I'm not sure which one did the job.

No one can really give you an answer on how fast neuropathy can progress. First there is the issue of what is causing it. If you can treat the cause you may be able to arrest the neuropathy.

I didn't realize I had neuropathy until I was presyncopal due to hypotension and bradycardia, and it was already thru my autonomic system. After skin biopsies, they found I had sensory neuropathy as well. I have it in my legs to above the knee, and in my hands. A muscle biopsy of the bicep shows neurogenic myopathy which means it is up there too. I was not diagnosed until it was advanced because I didnt have burning feet.

Their thought is autoimmune, and I get IVIG, which stops the numbness and falling asleep feeling. I have had Lyme in the past. Post lyme issues are treated for the most part, like fibromyalgia or autoimmune disease. Lyme is known to cause PN and dysautonmia. I would not wish dysautonmia on my worst enemy. I also carry a seronegative Sjogren's diagnosis. Doc at Hopkins told me half of Sjogren's pts. are seronegative.

PN is rather unpredictable. Take the best care of yourself that you can and search for a cause.

Good luck to you.

Were you diagnosed with anything or was has it been "idiopathic" the whole time?

You're supplementing with B12... were your B12 levels low?

Thanks,

Ed

I have alcoholic neuropathy (as one of the causes)
Mine is axonal sensory polyneuropathy
(of length dependent nature)

My B12 was borderline at about 550-600 and now
it is in the 1200-1500 range. The original B12 range
was probably a cause of the alcohol.
But my Sx were prior to the heavy alcohol.
But I was a musician and was playing in bars for many years of my adult life. My doc was mis-diagnosing my Sx for at least 5 years & I was self medicating with booze, before my Sx were finally Dx'd....... when I was hospitalized for pancreatitis in 1999. A change in docs and getting a good neuro specialist in PN, as well as these boards helped me find my way to living with PN.
Acceptance then taking action, were my biggest hurdles. Once past these, I was on my way to finding the proper treatment, meds, and supplements.

My PN
 

went from mild nerve damage (I woke up one morning with a completley numbly hand and foot but not much attention was paid to symtoms) and being able to up walk 3 flights to my apartment to a wheeldhair in little over a year - and tests confirmed completely senosry loss... I have full body pn - presumed genetic - (no other explanation has been found and high dose ivig didnt help - had every test in the books and consistenent is the presentation of the damage - both large and small fiber loss, and severe nerve root loss) also autonomic nueropathy - leaving me unable to have any food - just a few liquid supplements (9 years now) - and heart complications that continue to worsen but are controlled for now with meds....... (all my bloodwork was fine during all of this)

We are all different - my docs at first thought no big deal - just a post viral infection.... so it sure does pay do do our own reserach!

Abrupt Onset
 

My first visit to my GP was because both of my feet and legs went completely numb below the knees and my arms and hands had limited sensation below the elbows. I thought that I may have pinched nerves because it came on within 1 week. Years of testing for MS, ALS, CIDP, and brain tumors were negative, so then it was "in my head" despite frequent falls, foot drop and extensive damages shown on EMG. I did not get a Lymes diagnosis until almost 4 years after the onset of symptoms and have had it now for 11 years. I have relapses that further destroy my nervous system, no cure is known and so far no treatment has been helpful. My suggestion to is pursue a diagnosis and get the labs and studies to back up your symptoms because if the MD doesn't know what it is, they may blow you off until it is too late to reverse the damage (like in my case). Good Luck!

sensory GBS
 

My neurologist sugested that this can be a type of light GBS or toxic - if it progress very quickly - and then stop and start to improve. You need time. in my case it was like this - but now, 3 years after onset I start to feel improvment. no pain, no burning, and so.
So, eat well, take vitamines and think possitively.