New here with peripheral neuropathy / unknown cause
 

So glad to have found this forum. I am 40, Male, the only medical issue I have besides PN is Gout. I take 400mg a day of Allopurinol and watching what I eat have not had a gout attack in over a year with my uric acid levels in check. Problem is my PN. I have seen a couple of different neurologists among other specialists and can not find a cause for my PN. The pain of walking or standing has really impacted the lives of my wife and I. I constantly feel coldness/tingling/burning pain in both feet and sometime my hands, throw in the shooting pains in my feet, loss of balance (I now must use a cane to walk), and feeling of electrical shock in my feet. I am miserable. My wife and I can't do the things we used to do (hiking, skiing, snow shoeing). We recently moved to New Mexico and I get to start seeing another Neurologist at UNM.

Neurologists have prescribed Gabapentin. I was taking 900mg a day with no pain relief. I have since weened myself off with the knowledge of my previous neurologist. Not sure what to do for the pain. I can't take drugs during day since I need to function at work. In the evenings I have turned to Marijuana to help take the edge of the pain away so that I can sleep. I do not smoke...I prefer to bake.

I have started acupuncture and taking Alpha Lipoic Acid (400mg day). The acupuncture at times seems to be helping. I get less of the shooting pains but the tingling/cold/burning still persists. Only time will tell. Has anyone else received relief through acupuncture?

I just don't know where to turn. I feel as if I am 90 years old. Unable to walk, I am miserable. I feel terrible for my wife as I am not the man she married.

Had to put this down....don't really expect assistance here just wanted to vent.

Dewey

So sorry you have PN. That's tough to deal with.
 

Welcome to NT

We will listen to you when you want to vent. It makes you feel soooooooo much better.

I do hope you stick around. It sounds like you have a lot to tell.

Here is a link to PN

http://neurotalk.psychcentral.com/forum20.html

I don't know if you've ever heard of LED and infrared lights. I found them to help some of my symptoms you're describing. Cold, numb, tingling... pain... will share if you want.

It is harder for a partner to share in the bad, but that's kind of what "married" is about. Nine years and rolling (9 yrs post accident), it definitely puts a new perspective on priorities. I learned a lot about love on this lonely journey; good love/bad love, it's not always going to be perfect. We're not alone. Many here are struggling with the same facts. Time will tell. Live and love for today, my friend, for today is all we have. :grouphug:

Welcome to NeuroTalk Dewey!! :) :welcome_sign: I'm so glad you found us! :hug:

Welcome to NT... I am sorry you have this new symptom to deal with.

Allopurinol is on the list of drugs that can cause PN.

from http://www.ncbi.nlm.nih.gov/pubmed/8...m&ordinalpos=8

Allopurinol is not used as much now as in the past. So therefore not many people would be in the pool, to report serious issues.

The only way to test the PN link is to stop the drug for a while.
Please discuss this with your doctor, before doing it yourself.

http://i489.photobucket.com/albums/r...lcomeGroup.gif



Hi Dewey, and welcome to NT! This is such a great place with many caring, nice, and friendly people.

We're so glad you found us!

Me too dewey ! !
 

I also am a new member to this forum. It seems like a fabulous place to be.
I posted my very first thread in the Peripheral Neuropathy section. I was 40 when i became plagued with this nightmare. you are so right - it completely steals your entire LIFE. ! Not to mention the guilt factor that comes along with it. I feel like my husband deserves better and my kids USE to have a fun mom who did fun things with them. Now i feel like a useless blob.
Have u been told or recommended the Spinal Cord Implant ?? I am getting ready to try this as my last option.
Just wanted to connect with ya since it seems we are in the same boat.
Maybe I'll hear from you in the Peripheral Neuropathy section.
Oh, by the way, My PN is in both legs and I am becomming disabled right before my own eyes. It's a nitemare !!!
Take Care
Rae
:Dunno:

Allopurinol and PN
 

We have weened off Allopurinol in the past with no change in symptoms. I'll mention again to the Neurologist.

Dewey

Interested in anything that may help. Any info you have please share. Thank you.

Drug induced PNs, often have a component of damage to mitochondria. Other common drugs that do this, are statins for cholesterol and fluoroquinolone antibiotics like Cipro/Levaquin/Avelox.

You might try taking some supplements that improve mito functions. These are:
acetyl carnitine
CoQ-10
r-lipoic acid

These often help drug induced toxicities and are used for chemo damage, too. If you come to the PN forum and search, you will find more details.

venting is good!
 

Hi Dewey, Yes indeed, being only 40 something and suffering PN is worthy of venting here. I have used acupuncture for about 20 years and it has kept me going so far.It is truly frustrating how little doctors know about the causes and especially the lack of effective treatments. I'm a little older but had problems for over ten years. The hardest aspect is the loss of self-identity. I deeply missed my athletic persona and enjoyed it so much it left a big hole in my life for awhile. We need to honor the process of loss, even if temporary, we have grief in those areas which is appropriate.

In some ways it is good to know I am not my story, my body condition or other aspects on the physical level. At the same time the person your wife married, and who I AM, is always present, seen and loved and love-able. If you ask her if she still sees the real YOU I think she would agree that this is what matters the most. Check in with her, maybe it will help?!

Whether those who choose to believe in the entitlement of good health etc.. choose to see us as we really are, depends much on how we see ourselves. Then there are those who can only focus, or value the physical literal reality. I am not going to say more about those who are incapable of appreciating the gifts of experience of suffering We all know folks who don't get it..

Since I choose to identify with my Greater or Higher Self, I have had more ease, peace and over all satisfaction in my life. I am told that no one really knows what is going on inside me. I am authentic, open, expressive, yet do not portray what others assume chronic illness and pain looks like in their imagination.This leaves me open to express my best available talents and qualities still available at any given time or circumstance. Always the small blessings somewhere.

LIke I said earlier, this is the hardest aspect, to adopt as a new identity. I still have to learn to practice self-love and better care for every physical aspect on the material level, an ongoing learning process. Especially when practicing saying no to too much time on my feet. Re-framing my habitual patterns of identity focusing the parts which are not crippled, or ill, is my way through this madhouse of suffering which seems endless.

I live alone and I have been forced to find ways to cope with the existential loneliness of chronic pain etc... I am really sorry to hear how awful it has been for you. I hope you can find support and understanding on this site.

I also use antidepressants because who wouldn't be depressed under these conditions. Totally normal reaction to be sad, angry and say "why me?!" .As my higher self is not unaware-split off-- of the physical, it helps me copey by switching focus now and then. We are all of our aspects Perceiving life through the colored lens of chronic pain is extremely challenging. There are many on this site who will really listen, understand and offer good places to look for potential relief.

I do know that changing to CYMBALTA an antidepressant, has helped reduce the pain dramatically for me. It is now FDA approved for use in PN pain. It might be worth a try anyway. At least I can get out and enjoy the sunny days with a bit more ease.A blessing on many days now.

Hope you find some relief on your journey. This place seems to me to be the best site to get more help and understanding than anywhere else, so many share your plight in truth. Thanks for sharing and listening, good luck! TT

TT,

Thank you for your kind response. I know my wife sees me for who I still am inside. She has been extremely understanding and caring. I hurt since I can not share the things in life that we both enjoy. This too will pass. I have no doubt we will make it through this. We'll just keep plugging away.

Although I do feel that my pain pales into comparison to those that have served our country and sacrificed through illness, injury, loss of limb, and the ultimate sacrifice. I have dedicated my off time to serving our vets. I have found this to be a great therapy for me. Organizations such as the Patriot Guard Riders and Combat Veterans Motorcycle Association have provided me a way to continue to serve my community. (I served in the US Navy from 1990 - 1995).

Thanks again for the kind words.

Dewey

I salute you!
 

Hi Dewey, how great is it to be of service even when it takes something out of us at times. Comparing levels of suffering and pain is impossible to do rationally. Since you have been through much already, I am sure it helps those who are fortunate enough to be connected with you.

I am appreciating your appreciation very much. And happy to know you can always count on your close relationship(s) to remind you of what is the most valuable in life.

We agree that missing out on the normal fun activities is a tough position to be in. I miss my bike riding, long hikes, etc... I too hope to dedicate more time in service for others since it takes me away from my small self.

Hope you have a great Thanksgiving! Best Wishes TT

Welcome, I feel badly for anyone having to deal with neurological issues because of how frustating mine are yet I see others in here with a lot more issues than I have.

Good luck and best wishes seriously.

caregiver and new to site
 

Hi NM Dewey,
Although I haven't posted an official new member introduction yet, I'm sitting bedside (in a nursing home) with my 56 year old husband whose PN has mystified mystified three neurologists (seeing number 4 next week, one who specializes in neuropathy) and countless other doctors who have seen and tried to treat him since October when he became blind and January when he could no longer walk. I'm learning a lot from this site, but I want to share something from the caregiver's perspective.

On the first anniversary of my husband's initial trip to the hospital, he asked me, "Has this been our worst year or our best year?" And I had to say, both. Although he is in constant pain, we are on the brink of financial ruin, he hasn't been home since January, we've become closer, and are communicating much more intimately than before (the'best' part) . Is every day rosy? Of course not! Every day pretty much sucks for him, which makes it hard for me, too. But, because he's not angry all the time, doesn't wallow in self pity, can even laugh sometimes, it's bearable. Scary, but bearable. We avoid the "woulda, shoulda, coulda" and live by a few mantras, mostly focussing on doing the next right thing, and remembering it's not what life hands us, but how we deal with it. I hope this helps,
Sandy in Texas

Sandy,

I will say a prayer tonight for your Husband. Even though I have daily chronic pain I understand that things could be much worse. I actually count myself fortunate and blessed for what I have. I have Brothers and Sisters that are tormented on a daily basis by the demons of war along with serious illness or loss of limbs. I have learned much from my brave friends and feel blessed for what has been bestowed upon me.

Hang in there!!!

Much Respect,

Dewey

I feel your pain
 

But will try not to complain. Sorry Dewey. It sucks and is frustrating. I am a young fit 57 year old who is an organizer for an outdoor group. Had an aortic valve repair 2 years ago and spent the last year and a half rediscovering hiking, biking, climbing, caving, and kayaking. At the end of last Winter while snow shoeing, my right foot began to get numb off and on. eventually it moved into the left as well but not as bad. Knew nothing of this condition. Have experienced panic, grieving, helplessness, and occassional depression. (but won't dwell there) Have been to several doctors including acupuncture and massage. (no known cause) I've been able to still do most of my activities with some discomfort. Don't think I can do really long hikes anymore though. I don't know anyone with this condition and have gone it alone. Lately the burrning, iching and pain is not showing up. I have refused all the drugs recomended and have only taken supplements and am experimenting with a prescription of B vitimins called "Metanx". Flip flps are the mosr comfortable but now it's winter. I have a spcae heater under my desk at work and I sit here barefoot (keep your feet warm) At home under my computer I have a heating pad under my feet. this is the first forum I've joined. Once you accept the condition there is little info out there with helpful ideas as to what is safe to do, what to wear, and where will this condition end up. My question now is, "Is it worthwhile to go to a place like Mayo or Cleveland clinic? Is anything working to repair nerves anywhere. Okay that's probably enough for a firs posting.

Welcome to NeuroTalk. We have an active PN forum here with many people with many different situations.
http://neurotalk.psychcentral.com/forum20.html

I would suggest to you to take your Metanx on an empty stomach. B12 is not easily absorbed properly in the presence of food (particularly fiber).

Also one thing strikes me about your introductory post.
I would look to lacing those shoes too tightly. This can compress the nerves which are at the top of the instep of each foot.

I found this information and made a post about it.
http://neurotalk.psychcentral.com/sh...ghlight=lacing
This affects me considerably now that I am older. Compression can hurt!

There are other things as well, like insulin resistance(pre-diabetes), etc. But if you don't have symptoms in your hands and only the feet, I'd look at mechanical compressions first.

Thanks
 

I was told I was pre diabetic by my thyroid doctor. I went on a crash diebetic diet, lost about 15 pounds. Looking good is a boost even if you don't feel good LOL. I had the glucose tolerance test a couple months later and was told I had no diabetes but I stay away from anything white. flour, sugar, pasta etc. All other tests were negetive. However, they found protien in my blood and urine which sent me through cancer testing for myaloma (just to add to the nightmare) so far everything came out negetive for cancer. In the summer I wear flip flops, or these cool water crocks I found. If I have to wear closed shoes being a size 12, I have to wear a 13. I wear ankle supports with my hiking boots so I don't twist an ankle. I had orthotics mae but can't wear them because they are hard. Found a really comfortable pair from "Sofsole", the closest thing to a flip flp sole. I've looked for diabetic shoes that would have a lot of top room but they don't seem to make shoes for people who are still attempting extreme activities. Thanks for the advice on both the laces and Metanx.

Roll the dice treatments
 

I'd like to throw this out there. After my nuerologist came up against the wall, he said come back in 6 months. He said we could try several IVG or is it IBG treatments. I guess some kind of a platelet transfusion. (Is that smart, risky, or just a pasification?) The guy who runs the nueropathy foundation "Damian" months ago in a phone conversation told me it cured his rare, long time misdiagnosed condition. I also went to a pain clinic and they told me they could do a nerve block that could reboot the nerve. Or it could paralize me if they miss) I actually made the appointment but plan to cancel it as I'm not sure they know what they are talking about. Anyone have thoughts on these options. Panic and desperation can cause us to try some dangerous things. I don't want to make matters worse.

If you were diagnosed prediabetic, even tho your GTT wasn't remarkable... you could still have problems.

There are supplements that help with diabetic neuropathy.
One is Benfotiamine (an improved form of thiamine B1).
This has been used for years in Europe with success. Also some diabetics use acetyl carnitine to improve metabolism at the mitochondrial level. Chromium can help with improving glucose movement at the cellular level.
Next time you have tests, ask for a fasting INSULIN level. This tends to rise before the diabetes II starts, as a rule, and give a clearer indication of where you are along the path of insulin resistance.

If you were put on a heart/lung machine during your surgery?
There may be a connection there too.
http://en.wikipedia.org/wiki/Postperfusion_syndrome
It is possible to have some circulatory problems after being on the bypass machine. Since your foot gave out during a COLD situation, circulation might be an issue for you. Have you been tested for peripheral artery disease? Do you smoke?
Are your feet cold all the time, or worse when cold?
There are two supplements I am trying myself, that improve blood flow... you can Private Message me if you want more info. I'll need to know what drugs you take now. And what supplements you take besides the Metanx.

And you said--
 

--there was protein in your blood and urine that they started a cancer search for.

That immediately makes me think you may be one of those people with a monoclonal gammopathy, which is known to cause neuropathy. This happens when rogue proteins are produced by the bone marrow--monoclonal antibodies, or M-proteins--which sometimes signal the beginning of a blood cancer process, but sometimes have uncertain clinical significance; in fact, there is a documented condition known as MGUS--monoclonal gammopathy of uncertain significance--in which neuropathy is quite common, as the monoclonals tend to react to components of peripheral nerve.

Take a look at:

http://neuromuscular.wustl.edu/antibody/mprotein.htm