Peripheral Neuropathy Getting Worse
 

Hi Everyone,

I've been reading this message board a lot lately as my PN is getting worse and I'm looking for answers. I wanted to introduce myself and ask a few questions.

First of all, I'm a 45 year old male that started having symptoms probably 4 to 5 years ago. Initially I would get burning, pain and cramping in both of my feet at night. Usually worse when I just finished a bike ride. Over time, the pain in my feet got worse and worse to the point that it hurts to walk for any length of time greater than 5 minutes. I can't walk on my hardwood floors because they hurt so bad.

I first saw my family doctor and he did some blood tests which showed a number of things including high triglycerides, low HDL cholesterol, glucose a bit high - 118, and a few positive ANA readings that had me sent to a Rheumatologist.

She ordered two EMG's over two years, but really didn't do much else. The EMG's showed mild deficiencies, but nothing great.

Through all of this, my feet have gotten worse and worse and now they burn almost all of the time. I started seeing a Neurologist who prescribed Gabapentin. He then referred me to the University of Penn to their Peripheral Neuropathy specialist. The gabapentin was really bothering all of my joints. I had a hard time typing on my keyboard (and I work on a computer all day). So, he has now switched me to Elavil.

Both medications are making me terrible. Neither Doctor has suggested anything else other than increasing the meds and trying different ones until I get some relief. I'm not feeling very positive at all about any of this.

So, I saw the posts by Wing42 - A program to heal nerve damage and reduce PN symptoms - that has a whole plan laid out. I see these were written in 2006. It's been a number of years and I'm wondering how people who have followed this program are feeling now. How long does it take to feel some relief? Where do you buy all of the supplements? Looks like it could cost a fortune.

Sorry for the long post. I'm in a lot of pain and not feeling very good about the path that the Neurologists are laying out.

Hoping to find some other alternatives.

Welcome to NeuroTalk:

Today is a very good day for you!

We have a B12 thread here with lots of information, but people just won't read it. :confused:

So today Jason, one of our posters here, found this video.

http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

After you watch this, then go to my thread which goes into more detail about methylcobalamin (which is mentioned very briefly on the video) for dosing and how to take it (empty stomach only). My thread also explains MTHFR DNA mutations which lead to poor if any methylation of B12 to its active methylB12 form and the video did not go into that either.
http://neurotalk.psychcentral.com/thread85103.html

Rather than start with a shot gun approach of taking a huge list of things (some of them may not work for you, like the SAMe, etc). If you start with the most likely and work up... you will save money and understand your particular PN better.

Can you give us more details about your lifestyle, what RX drugs you took (antibiotics) or take now...like statins for cholesterol... which can CAUSE nerve damage. Solvents, hobbies, traumas, surgeries, vaccines, etc. All are possible triggers. Diabetic PN would lead to supplements specific for that.

But the most common is low B12, and that should be addressed first, as it might fix things easily. When you get the test get a Vit D also. Get the numbers and don't accept "normal" as the ranges are outdated, and you could be labeled normal when you are in fact low. In US you should be at least 400pg/ml, for B12.

With the high triglycerides, etc I would change the diet right away. Do you eat sugar and carbs? Sugar and other things are very bad for the nerves and body. That, along with supplements have been so great for my autonomic neuropathy and PN. Easy and safe. I would start there with diet and supplements for sure.

I agree, B12 needs to be checked, Vit D also. There are many things that might help you so I am happy you are here.

Thanks for the replies!
 

O.k. I have a few answers for you both. Thanks for the replies. I appreciate it.

First of all, I haven't been taking any prescription drugs other than fish oil for a long time. I did have a bad infection in my elbow a few years ago. I can't remember if that was before this started. I think it was. I was hospitalized for 3 days with intravenous antibiotics. Don't recall what they were and they sent me home with oral antibiotics.

My lifestyle was and still is very active. I'm a mountain and road biker, but that has been harder with my feet hurting all of the time. I used to walk all of the time and hike, but that's out the window at the moment.

I did get tested for B12 and Vitamin D. At the time Vitamin D was flagged as low. It was 28 ng/mL. Range says 30-80. B12 was 715 pg/mL and the range said greater than 211 as normal.

Years ago, 1996 I had back surgery to remove a bulging disc between L4-L5. My Neurologist did an MRI just a month or so ago and he didn't see anything that he felt could be causing the Neuropathy. I do have a few bulges, but nothing major.

So, I've never taken statins, never had chemo, was tested multiple times at all of the best labs for Lyme Disease, had multiple HIV tests, all negative.

Right now they are calling it Idiopathic Peripheral Neuropathy and that it may be hereditary. My 72 year old mother has some of the same symptoms, pain and burning at night, her feet feel like she is walking on a bunched up sock, etc. Her pain is not nearly as bad as mine.

Thanks again. Any thoughts would be appreciated.

One more thing...
 

I failed to mention in my previous post that I did see a Podiatrist who told me my problem was Tarsal Tunnel in both of my feet. He did Prednisone injections in both of my ankles 3 times and prescribed oral Prednisone for about 3 weeks.

My feet did feel much better after the shots, but the effect wore off after 2 or 3 weeks. Then he said we had to do a Tarsal Tunnel Release surgery in each foot. That's when I went back to my Rheumatologist and eventually to a Neurologist. The Neurologist did my EMG and wrote in the report: DO NOT HAVE TARSAL TUNNEL RELEASE SURGERY!!!!

So, I haven't and I also haven't been back to the podiatrist. I do think that after the shots in my ankles things got much worse. Maybe it's just my mind playing tricks on me, but my fee are so much worse now and that was last year right around this time.

ugh... 3 shots in the ankles! that is alot.

I had one steroid shot in my left ankle, several years before now, and
before it never swelled up, and now it does. I had had a spider bite on the other side of the ankle, and the ignorant podiatrist (who I did not return to) did the shot on the medial side because I still had inflammation from the bite (which required antibiotics, and steroids on vacation, oral).

That foot also had a surgery 50+yrs ago, to remove a tumor on the instep...so I always blamed that surgery. But that steroid shot in the ankle, could have also done "something" too. That ankle flares and improves, and flares again. On a schedule only it understands!

I'd really suggest you start with magnesium .. soak in epsom salts for a few days and see if there is improvement.

Also do you wear those tight boots? Hiking boots? Those could be compressing things and adding to problems. I'd really look to your footware for a while. I use an alternate lacing for my athletic shoes now and that really helps. They take the pressure off the instep and stop squeezing the nerves there.

Here is some homework.... a great website with drawings of the feet, showing where the nerves are, the tarsal ligaments, etc.
The shoe lacing is found there too.

http://www.northcoastfootcare.com/
There is so much on this site to read...all of it very good and useful.

Here are the alternate lacing techiques:
http://www.northcoastfootcare.com/pa...echniques.html

I use springy white spiral laces now( from Famous Footware), which are made for kids, so you probably wouldn't go for those. But they take the pressure off the instep and stop the numb toes I used to get sometimes.

Idiopathic simply means that they haven't found a source for it. The fact that your Mom has some of the same symptoms and that it may be hereditary it might be worth looking into DNA blood testing. Hope you find the answer.

If your B 12 is 1350??
 

If your B 12 is 1350 should you still take B12?
Newly diagnosed but have had the neuropathy along with fibro for at least 5 years. Am very scared I am going to die because of it. It's so painful and read it could damage your heart and organs.
Thank you for any replies.

Welcome to NeuroTalk:

Were you taking vitamins when this test was done?
If so and you didn't discontinue them, for about 7 days this could
be a false elevation.

Can you give us more information about yourself?

Some autoimmune neuropathies begin to affect the autonomic nerves that supply the stomach and heart. But not all of them.
And not all neuropathies are due to low B12 either.
You could have a DNA methylation mutation that results in failure to methylate (activate) B12...so it cannot work properly.
There is another test called the MMA...which will demonstrate if your B12 actually works. Or you could have run into a lab error.

Many things are possible, therefore.

So please give us a history of what you were doing when this started, including all medications and vaccines you took or are taking.

Where to start.
 

I don't wear tight boots and in fact, haven't been hiking in a while. Just too painful.

So, I'm trying to decide what supplements I should start with. As I mentioned my b12 test was over 700. Should I start with: Benfotiamine? It seems to help many. I'm already taking Vitamin D.

I agree about not starting with everything, but there are so many listed that I'm not sure where to begin.

Benfotiamine would be a place to start, if you drink alcohol, or eat alot of sugar and carbs. People with insulin resistance or beginning impaired glucose tolerances, find it very helpful.
300mg a day for about 2 months.

Make sure you are using a good magnesium product, at 200mg a day elemental (which is 1/2 the RDA)
And you can try the fish oil/ krill oil, for anti-inflammatory effects.
3 fish oil or 2 Krill oil daily.

The acetyl carnitine would be for those who have toxin induced symptoms either from drugs or chemicals. But if you want to try it, start at 500mg a day in two divided doses of 250mg each.

See what happens in 2-3 months on this, including your B12.

I forgot the R-lipoic acid stabilized by Doctor's Best... sorry.
100mg a day.

My computer is very slow today, as the DSL went down during a storm last night. It remains pokey today for some reason.

Thanks again.
 

I really appreciate your recommendations.

In your experience have you heard of any Neurologists suggesting any of these supplements? Neither of the Neurologists I've been to so far never mentioned anything other than drugs. I went to an Orthopedic Surgeon who specializes in feet and he suggested I take B6. He's the only one who suggested anything other than drugs.

There have been some posters here (not many but a few), who
have stated that their neuro suggested lipoic acid and acetyl carnitine.

Dr. Blaylock MD...has a newsletter, that Joano posts about now and then, and he recommends lipoic acid and theanine. He has thru his career as a neurosurgeon used supplements to aid healing of his patients. You can Google him, and see his own recipes for neuro support.

Excellent. Thanks again. Really glad to have found this forum!!!

Would you be able to get the records associated with your hospitalization for the infection and your hospital discharge to find out the details about the antibiotics you received?

You're probably OK without b12, especially if you eat red meat. Vit D is so inexpensive, and since you were low according to the tests, I'd stick to that one.

I am personally gibing the benfotiamine a shot. Here in Canada its not sold in stores so I went to I herb.com and ordered some. Its helpful to read the user reviews.

All of these take time , more than one bottle. Its tough, because we want results right away.
Alpha Lipoic Acid is a big one that is used with success, especially for diabetics. It ha some blood sugar lowering effects. I used to work at a health food store as the nutritionist.

As for medication, I have found that a combo of Lyrica and opiates to be what get me through the day..
Good luck

That's probably a good idea. I didn't really think about that as being a possibility, but the more I think about it, it was before all of this really started.

I actually don't eat red meat anymore. I'm not eating much meat at all. I think I'll start with what MrsD recommended and see how that goes. At this point anything would be worth a try.

Not eating meat started my problems. Make sure you get tested for B12 and get all of the amino acids, carnitine etc you miss.

I saw a nutritionist years ago and then started eating meat again.

It's interesting that you say that. I was wondering if my not eating meat the last 3 years had something to do with my feet getting worse. I have to rethink everything. Since the last message I posted I got results from two blood tests I had the other day for Glucose. Fasting and Postprandial and both were high. With my high triglycerides and low hdl cholesterol as well, we might be getting to the root of my issues.

You will lower your triglycerides by up to 1/2, with the fish oil, if you take enough.

It would be useful to know your A1C reading too, besides fasting glucose. A1C tends to go up age and reflects a 3 month time period instead of a small window.

Cholesterol readings are not likely to be affecting your PN IMO, unless you take a statin, which WILL affect and cause some PNs in some people.

High triglycerides thicken the blood and impair circulation. So if you are over 300 with those, getting them down will improve blood flow to your feet. (avoiding high fat meals, will also do the same as high fat meals thicken the blood as well).

Oh yes, triglycerides tell a story about sugar, as well as cholesterol. My glucose levels are always very good but for nerve health my integrative MD told me I should stop refined sugar, gluten and bad carbs. BOY did my next triglyceride etc testing come back good! :D

Learn all you can about your blood sugar and diet. Sugar/carbs are not good for the nerves and blood sugar, even if you have normal testing like me. It is great for everyone to have level blood sugar. Otherwise it is toxic to our nerves.

Good carbs are important but the processed ones, rice, potatoes,etc spike blood sugar.

Diet and supplements are really important.

I do think you are getting some good answers that will help.

Hi. I was not on Vit B12 and was not on them when this test was taken. B12 makes me nauseated.
I started getting numb, pain and tingling on my left side back in 2005 and have continued to go to the doctors since then trying to get help and figure this thing out. They thought a stroke. I have symptoms of Memory loss and Gait Disturbance but have all of these other issues that we can not find a reason for. Pain in fingers, knuckles, wrists, ankles, knee's, behind knee's, hips, upper back pain stiff, neck very slow to turn...stiff and grinding, jaw pain, feet burn on bottom and pain on top and bottom, toe joint pain, headache, left temple pain, eye twitching, twitching, dry eyes, fibro foggy thoughts, bad memory loss, sleep problems, cold sensitive, heat sensitive, light and noise sensitive, joint pain, my skin even hurts, muscle pain, thrush, incontinience, hoarse throat which causes hoarse voice, scratchy throat, feet and hands feel like gloves on with tingling & pain and knumb....hurts very much, fatigue, My hole body feels inflamed from head to toe, anxiety, limbs numb tingling.

Medications

Metoprolol 25 mg twice a day
Lorazepam 1 mg 3x's a day or as needed
1/2 benedryl bedtime
Plaquenil 200 mg twice a day
Ibuprofen 600-800 mg a day
CoQ10
Fish oil
Folic acid 800
biotin
2 81mg ec aspirin a day
Stool softeners a day
Fiber
Nasal spray as needed
Oxycodone as needed
magnesium
calcium
potassium.
I am Iga and Igg deficient but not too bad. Throughout have thought possibly lupus but just same symptoms. Ana is elevated always. Antihistones elevated. IBS. Always feel like I have severe inflammation. I have almost every single symptom of fibromyalgia and am told that I have it. Some doctors say that is not a diagnosis until this last one who say's it is a diagnosis. I have had depression since my very 1st memory when I was 5. I have taken so many medications for depression and pain that either do not work or cause severe reactions. Even some vitamins cause problems in my brain.
I have recently started myself back on lexapro due to my anxiety and depression. The doctor wanted me to start effexor and we were to discuss it next app. that I do not have scheduled yet. I didn't feel I could wait until an appointment to start effexor and I still had some lexapro. I have a ton of stress and all of this seems to be much worse with the stress. Night time is so much worse with pain. Different weather totally effects my inflammation. A 4 month stay in Florida for my husbands treatments was a total surprise that I had no pain or inflammation and felt like I had never felt in my life......which was wonderful to live without pain in that time. If I could go back............I would stay.......but I can not. Sorry so long. Hope this helps.

If moving to a warm location helps, that would suggest cryoglobulinemia. Have you been tested for that?
This is a peptide protein from the bone marrow that clogs up in cold temps, and dissolves in warmth. When clogging up the little blood vessels, there is ischemia therefore at tissue sites, with
pain and damage.

http://en.wikipedia.org/wiki/Cryoglobulinemia

Any Dose
 

I had a fairly thorough check-up by a neurologist a few years back when I was trying to get to the bottom of the pain that was at that time dx'd as fibromyalgia. We hadn't yet focussed in on neuropathic pain but he did know I have type 2 diabetes. The only thing he recommended at that time was Alpha Lipoic Acid or R-Lipoic Acid (a stabilized form of Alpha Lipoic Acid). When I asked what dose to take, I found his answer smile-worthy, he said, "any dose." :)

Evidently he knew of a patient who felt it really helped him, but didn't know of any specific dosing parameters.

So yes, I have first-hand experience with a neurologist suggesting a supplement!

Hi Msmull
 

I am sorry you have PN. I do too, but I have found some relief. MrsD is correct about B12. For over a year, I have seen a doctor called a physiatrist. The deal with pain first, then try to treat the whole body at a cellular level. This doctor reduced my pain. Last summer I had to be pushed in a wheelchair at the state fair...this summer I am walking much better.
I take B12 injections weekly, and a few other suppliments. Also know that I didn't believe in suppliments at all. My PN was caused by a surgery that didn't go very well, and three torn tendons in my ankle. I have healed wrong.
I can't say that my symptoms are gone, but they are definately better than what they were. Yes the suppliments can be costly, but there are sites recommended on NT. for the best prices.
I hope you find some answers that work for you. Keep hope alive that something can be done. ginnie:hug: