Newly diagnosed with PN - odd change in finger pads
 

I've had PN symptoms for over a year now but just recently obtained an "official" diagnoses from a neurologist, so I have joined this forum to see what I can learn from others who also suffer from this.

It's been discouraging to read on various medical sites how many forms of this disease remain idiopathic. Nonetheless, coming from a technical background I'm used to troubleshooting problems and take that approach to any problem in life which is do some research, don't assume but actually test where possible and with all due respect never rely 100% on any one persons opinion of the problem even if they are a doctor.

At this point I've had an EMG which revealed normal large fiber activity so I've been told this is small nerve neuropathy in feet and hands. I've had multiple blood tests which my neurologist said were unremarkable. I just obtained a copy of these tests and noticed the B6 level was over twice the upper range which my doctor did not mention. But then I read a post here that suggests a false B6 reading may not be that unusual so it's hard to know what's real on that.

The question I wanted to ask is about the appearance of the hands and if anyone else experienced this. At the height of the PN symptoms I had a sudden change in the fiingerpads at first. They developed a pruney appearance as if I had been in a pool for a long time. Loose skin as if there were air pockets under the skin as opposed to a normal fleshy fingerpad. Pressing against an object left an impression on the pads for an abnormal amount of time, as opposed to springing back normally. Within a month striations appeared on the skin further down the fingers. All of this was in conjunction with pins & needles in the fingertips and an abnormal sensitivity to cooler temperatures.

I have asked three doctors about this change of appearance in the hands and I'm getting something of a deer in the headlights response. One said he's never seen anything like that, another basically ignored my question and another tried to tell me it was normal.

My apologies for making this long, I'll try to be more succint in the future :~).

Hi Apex Clipper

Welcome to NeuroTalk :).

I am sure that the other regular contributors to the PN forum will be able to offer you helpful thoughts and suggestions.

All the best.

Welcome Apex Clipper. I have these symptoms and I have idiopathic SFN. I also have Raynaud's. I have always thought theses symptoms were related to the Raynaud's. Hope this helps in some small way.

Thanks for the reply, I had read about Raynaud's but when I questioned my doctors they dismiss that in my case, plus when I look at photographs of folks with Raynaud's it's not really a match for my symptoms. That being said I still find it hard sometimes to trust completely the conclusions doctors reach by simply looking at my hands.

Thanks Kiwi :~)

We have 2 threads about this.... a new test to show if a person has SFN... by observing the winkling of the finger pads in response to Lidocaine applied to them.

However our search function about this topic brings up our old addy location for them which is broken since we moved to a new server over a year ago.

So here are some links explaining that nerve damage to the hand does not allow wrinkling to occur.
Case of the month: The skin wrinkle test: a simple nerve injury test for paediatric and uncooperative patients

Evaluation of the finger wrinkling test: a pilot study
As you can see, the results can be spotty.

This article discusses a new test using Lidocaine applied to the fingertips. There is a good photo of the grades of reaction of wrinkling in this link about the study done.
Evaluation of the finger wrinkling test: a pilot study
I found this link however difficult to really understand. No wrinkling is indicative of nerve damage, it seems.

When I did this test here, my left hand had wrinkles and my right did not. This corresponds to my long history of carpal tunnel. But lately I have had a flare to my left hand of nerve pain which I thought was a sprain of some sort. The wrinkling which I had commonly is now gone.

Your increase of wrinkling may be addressed here:
Wrinkled Fingertips Causes, Without Water, Thyroid, Diabetes, Dehydration, Lupus, in Water, Treatment

The photos in the above link appear dramatic to me. I've never had wrinkles like those shown to that extent.

Do you have this degree as in your photo, equally in
both hands?

Welcome to my world Apex, but sorry you're here.

Time to put those debugging skills to the test. :p

Janie

BS EE

Thank you for the feedback, I'll take a read over these links. The quote from Galileo pretty much sums it up!

In answer to your question, yes both of my hands have the same appearance as in the picture I posted. Both hands have constant nerve tingling, as do both feet and now lower legs, which seems to be getting progressively more pronounced.

Hi Janie, ahh yes, if only our bodies could be debugged as logically as I used to debug communication systems. Not quite the same I'm finding :~)

I was wondering which supplements or processes you listed were the most effective for you?

When I started getting significant numbness in my right foot I brought out a TENS unit that I purchased years ago for a lower back issue. On first application to the numb area on my foot I couldn't even feel the current on the highest setting. Did a 30 minute session anyways. 24 hours later on repeat I now had sensitivity on a 1/3 intensity setting. It's a temporary affect as I'm sure you know.

Are you eating food with MSG in it? Most restaurants add it to everything. Most processed foods have it too. This can cause triggering paresthesias. Histamine releasing foods or foods with lots of histamine in them also may trigger PN type symptoms.
Do you have times with less or no symptoms? Keeping a journal may help you isolate a food problem. Nightshade veggies (peppers, tomato, potatoes) can trigger tingling.

People come here mostly when they are falling thru the medical system's cracks. Dissatisfaction with doctors is very common here. It is therefore time to consider some DNA testing. Our Bipolar forum has just started reporting that they are now being tested for DNA mutations. People here do get this testing too, because I encourage this. Janie has had this testing and found out some very important information about herself, which is not common. Doctors however do not still encourage their PN patients to have this testing, which is really quite a shame. It appears that the doctors treating bipolar have just had medical continuing education and this has not reached others, yet.

If you have not done so yet, I strongly encourage you to have the testing. Janie can share her posts and information for you here. The most common mutation is MTHFR which up to 40% of people in US have. Her major mutation is with biotin, which is much more rare than that. So that her supplement stack would be different thatn most of the other posters here.

The DNA testing like (23and Me and others) is not so expensive now and can be done. Having equal presentation on left and right sides of the body suggests a global problem and not specific to compressive triggers like your lower back. Charcot Marie Tooth (CMT) is a genetic PN error which there is no treatment for as yet. Testing for it is still very expensive however. If a doctor suspects this, he/she will often stop other testing.

There are exceptions to equal left right presentations.
Your B12 should be above 400pg/ml...but labs still report lower numbers as "normal" so you need to check your results on your blood work. If you took fluoroquinolone antibiotics, or Flagyl in the past, or statins for cholesterol those damage nerves even after stopping the drugs. So exposure to those and some other drugs continuing, will thwart any efforts you choose to help with healing.

There are over a hundred causes of PN, and having some information pointing to a specific cause, helps tailor what you
can do for yourself.

Your activities and job can point to PN issues. Constant vibrations (tools and machines), exposure to solvents, excessive exercise routines can contribute to nerve pain/discomfort).
Excessive sugar consumption can lead to pre-diabetes, with can have PN symptoms too.

Lots to think about therefore.

Yes, my engineering degree didn't quite prepare me for debugging the human body. :rolleyes:

Please take this with a grain of salt and understand that every one of us is genetically unique with our own set pf problems, but here are the supplements that I think have helped me:

- High quality fish oil - 1400 mg/day (Google "ER stress fish oil")
- R-Lipoic Acid - I tested low (Read MrsD's posts on it, though. I don't think she's a fan)

I mention these two because when my SFN first hit, acutely, I was a mess. When I started the RLA, I feel it dialed back a notch. And then increasing my fish oil intake seemed to help even more.

I've also recently started taking a high quality biotin supplement which seems to be straightening out hypoglycemia and metabolic issues I was having. I have a rare genetic mutation that causes this. I don't think the biotin is helping the neuropathy, though. I had been hoping it would because extremely low levels can cause profound neurological problems.

My TENS unit seems to help me quite a bit at night. It cycles on any off at a one hour interval. I only need to use it when I'm really flaring. I crank it up, and it seems like that sensation produced by the current is all my brain processes. And because I know that current is SUPPOSED to be there, it doesn't register as a problem like all the other neuropathic weirdness and discomfort does. I don't pretend to understand it well, but I'm thrilled to have that tool in my arsenal.

Oh, and the magnesium cream or spray I use on my feet seems to help when they're bad as well. I also think oral magnesium helps the crazy "internal twitching" I feel in my legs.

I do pay fairly close attention to food intake and rarely eat out so MSG is most likely not a culprit. Also maintain a reduced refined sugar diet. I had not considered a histamine association so will research that more.

Periodically I have had "episodes" of almost complete remission of symptoms that have lasted an average of 1-3 days but these are becoming rare now and the symptoms are becoming more relentless. So it does appear to be systemic. I've had antibiotic treatment in the past but well over 10 years ago was the last time. No statins. For B-12 they tested m-malonic acid or MMA serum which I've read is a highly sensitive test and the result was 0.11 umol/L in a range of 0.00 - 0.40.

After reflecting on any new changes to my regular diet or medications preceding the onset of symptoms there was one change. Just shy of a year before symptoms I switched from topical testosterone replacement therapy, to treat low testosterone, to intra-muscular injections of generic testosterone cypionate simply because my insurance company no longer covered the extremely expensive topicals. Doctors nix any association but I'm left wondering and considering discontinuation as the test.

Yes, I wound up here due to dissatisfaction with local doctors. After completing basic diagnostic testing for the most common causes they are now more then reluctant to pursue any further diagnostics, in fact they have directly declined to do anything more in that area.

I will look further in to DNA testing as you suggested, I'm familiar with 23andMe from working on my family's genealogy but did not do any DNA testing. I very much appreciate your input here, thanks.

Yes indeed, understand that everyone is different and may or may not respond to various supplements or treatments. With my symptoms now becoming more relentless I'm becoming a mess on some days so can relate to that. Thanks for sharing some of the things most helpful for you and I hope you improve as time moves on.

Will have to find a consumable alternative to fish oil pills, tried them before but they are typically huge and hard to swallow for me!

If you could stand swigging it....

Amazon.com: Pharmax - Finest Pure Fish Oil - EFA Supplement with Essential Oil of Orange to Support Bone, Brain, and Cardiovascular Health* - 6.8 fl oz (2 ml): Health & Personal Care

________________________

I could handle a teaspoon I think, good reviews overall and many say no fishy taste. Looks pricey but 40 doses per bottle translates to 90 cents a day. I just ordered a bottle, thanks for the link :)

There is always krill oil. We use costco brand 500 mg per day.

There's a bigger bottle that brings the cost down a little, but I thought you might want to see if you can stomach it first. When I was using it a few years ago, my HDL was higher than my LDL. I'm going to try it again. It doesn't taste terrible, but you're still swigging oil. :p

Neuropathy
 

I have had small nurve neuropathy in both feet for 25 years. 10 years ago I got neurological test to confirm. Now I have symptoms of MG. My nurve pain originates in my low back. I have tried all the drugs, acupuncture, back surgery, steroid injections, and a new procedure where they inject a numbing agent in in each ankle, 8 shots in each every other day for a total of 64 injections each ankle. It worked well about half way thru, then the ankles got inflamed and I regressed back to where we started. Overall it was not successful!
I have cold feet all the time, cannot stand to have anything touch my feet so no socks or shoes, just flip flops. I just use pain killer to make it thru the day.

Hi there, I found YUGE thread while searching for information in my strange finger pads. I have had sfn for a little over a year. In feet for a long time. Then I noticed the wrinkling and pad deflation that match your photo. This was about 4 months ago. I now have dry skin on my Ganda and feet also. I guess I wasn’t sure if this was the neuropathy but it seems more likely now. May I ask if you gave had any further changes? The neurologist cannotfind a cause in my case. I don’t think he fully believes me! His view I’d myfingers was that they were unremarkable. This strange skin effect has progressed though.

Hope to hear from you.

Keith

Same with me
 

I have the same thing. My hands and fingers have had pins and needles. That eased up today and my fingers now look like the have been soaking in water all day and they are sensitive. I hate the feeling. This definitely is a sign of PN. Don’t know what caused mine, I am on a drug for my atrial fibrillation called flecainide and that can damage nerves, my glucose readings were high a few times maybe it could be that?