Beginner with PN
 

Hi all. I’m new to the group. I stumbled into your forum looking for some help and I’ve already seen some encouraging posts. I appreciate it.

About a year and a half ago I began noticing numbness on the bottom of my left foot. I put it aside for several months because I was mainly distracted by a problem with nausea. The nausea was due to my stomach not digesting food as fast as it should (gastro-paresis). I’ve altered my eating habits to manage it. It’s a problem common to diabetes but I don’t have diabetes. In the meantime my numbness spread from my left foot to right foot to hands. At the office my feet feel like my socks are bunching up. I also have tingling and occasional pain. At night now I have feeling of cold or hot in my feet that affects my sleep. I had a brain MRI that was unremarkable. I had a nerve conduction EMG done that concluded there are “subtle electro-diagnostic findings suggestive of mild sensory poly-neuropathy”, and it was noted that this testing does not assess small fiber nerve function. The neurologist said blood test results were normal. He said he didn’t know if the gastro-paresis and PN were related. He didn’t know what caused the PN. He didn’t recommend anything for pain, or any vitamin or supplement regimen to address the PN. He told me to wait awhile and schedule an appointment if it gets worse. I don’t drink or smoke. I don’t take vitamins or drugs. I have a desk job.

I can always go back to the neurologist but I don’t believe he’d have anything new for me if I didn't have anything new to report to him. Here are some results from the labs he ordered: B12 (339 pg/mL) with Folate (22.41 ng/mL), Lyme AB (Neg), TSH (5.08 mIU/liter), ANA SCR (Neg), ESR/WEST (7), RPR (NON REAC), free Thyroxine 1.18 mg/dL, and C REACTIVE PROT (0.2). Just a note last November my TSH and Potassium were elevated for some reason but recently are in normal range.

Should I recommend other tests with the doc as he may have overlooked something? Is there anything I can do on my own, now, any supplements I can take, without knowing the cause that might generally help with PN? Thanks for any advice you can offer.

Mike

I'm sure MrsD will be by to talk to you about your B12 results.

The gastroparesis is an autonomic dysfunction and can be the result of PN...all depending on what's causing your PN. I would suggest you inquire about a skin biopsy to check for small fiber neuropathy. It is the definitive test for this (you are correct that EMG cannot assess SFN).

Welcome to NeuroTalk:

Your TSH is considered today to be borderline. Newer ranges end at 3.0, but many doctors still cling to the old range. Hypothyroidism is a cause of PN. That is how mine started 30 yrs ago. I'd get a more aggressive opinion on your thyroid. In my case I had a radioactive uptake scan showing that the gland was damaged. Treatment with only 75mcg of levothyroxine was a huge help. I still have some 10% remaining numbness in 2 toes, but I had a very good response to treatment.
I keep my TSH between 1.5 and 2 now.

The B12 is a bit low and you can raise that up yourself with oral methylcobalamin.
Here is my B12 informational thread:

http://neurotalk.psychcentral.com/thread85103.html

I would also get tested for Vit D. Low D is showing up now in many people with hard to diagnose conditions and who have chronic pain.

Vit D information:
http://neurotalk.psychcentral.com/thread92116.html

Do you know what your A1C results are? Hidden insulin resistance and prediabetes, can start the neuropathic process long before frank diabetes. Sometimes fasting morning glucose is normal or even low, when this starts. At that time damage can be happening to your nerves.

You will also want to look at current and past drug use.
Statins for cholesterol cause neuropathy in some people. So do many antibiotics.

Drugs that can cause neuropathy:
http://neurotalk.psychcentral.com/thread122889.html

You will need to look at your environment for hidden toxins. Arsenic in well water, heavy metals somewhere like lead, mercury or thallium or cadmium, solvent exposure from hobbies or job, (various art or printing activities)
using dry cleaning services may expose you to solvents too.
Pesticides in farming and gardening.
There are many other things as well... including autoimmune problems which need aggressive testing to find the culprit.

Unfortunately, but true, is that many people with PN have to become a detective of sorts, in order to find their trigger, and help improve their lives. Doctors today only do so much and that is not alot.

Thanks for your response and advice and good leads.

En bloc, thanks for information on a possible relationship between PN and Gastro-paresis, and skin biopsy recommendation for small fiber.

Mrs D, thanks for sharing your experience with TSH. I can go back to the neurologist for closer look at that. You asked if an A1C was done. I checked lab reports and don’t see A1C. I do see what appears to be regular no-fasting blood glucose tests that reported 88, 79, and 79 in three labs in the last year (“normal” range 70-110). Also, my cholesterol is normal so no drugs for that.

Before I finished writing this, just now, I decided, based on your comment about the possibility of a toxic anti-biotic, to investigate the antibiotics I have taken. I took Levaquin about the same time the numbness started close to two years ago now. As I recall, my achilles tendons started hurting and I stopped taking the pills. I believe I took 8 of the 10 that were prescribed. Do you believe this could be the cause? I felt no numbness while taking the pills. The tendon pain went away. It’s interesting that the toxin in the Levaquin may have remained in my body after I stopped taking it. Any advice on how I should proceed with the neurologist? I will follow your drug thread. Do you think the Levaquin is the slam dunk cause? Or should I also continue to ask for more aggressive testing for Hypothyroidism, D3, Autoimmune disorder, A1C, and small fiber? In any case, I also believe I’ll start the B12 (methyl-cobaline).

Mike

When I was hypothyroid my glucose was always low. Some fastings like 70. When I had my treatment with levothyroxine started my fastings went up to 90. Consistently low blood sugars may indicate a reactive hypoglycemia, which may be starving your nerves when it occurs. When glucose is low, the mitochondria cannot produce energy. A supplement called acetyl carnitine can help encourage fatty acids to be substituted so that the cells can function more normally. Carnitine is normally made in our bodies, but this synthesis may become damaged and fail.

Yes, unfortunately, the Levaquin is a possibility. On that link I gave you, there is a link to Dr. Jay Cohen MD's website where he has suggestions to help overcome fluoroquinolone toxicity.

The mechanism by which these drugs affect tendons is not clearly understood yet. But as far as the nerves go, I suspect a mitochondrial damage of some kind. I have several links in that thread to other places that give more details. Some people believe this damage is permanent, but Dr. Cohen holds out the hope that some supplements may help.

The A1C is an average reading over time that shows spikes in blood sugar that regular testing misses. In many ways it is more useful than glucose readings. Aberrations in blood glucose may be "hidden" for many years, before showing up in standard isolated glucose testing. Some doctors believe these aberrations start the process of diabetic neuropathy.

All of the suggestions that Mrs D has given you, pre-supposes that you have a neurologist who specializes in PN and is one that will intelligently work with you, in testing for causes.
Your past experience with your present neuro
doesn't sound as if s/he is one to do that or has the experience treating various forms of PN.
Possibly a new doc is in the future for you.(?)

Thanks, yes the thought of a new doc has crossed my mind. Funny, I know what testing I think I need now but I also need a strategy to convince him. Bottom line is I will look elsewhere if I have to. Not sure right now where to look or who will listen. I'll cross that bridge when I come to it (which might be soon). The neurology department is short of docs so I couldn't get an appointment until Oct 28. That's so far off that I requested at least a telephone consultation this coming week. I plan to ask for testing asap in at least the following areas: Flouroquinolone toxicity (because of the Levaquin I took), more aggressive for hypothyroidism (my borderline TSH levels), A1C, and small fiber skin biopsy. By the way, I just started the B12 methyl cobalamine (5000 mcg/day), my B12 lab was 339 which is on the low side.

I just had a telephone consult with my neurologist. First thing I mentioned was the possibility that Levaquin (flouroquinolone) may be the cause of my PN. He said there was no connection. He said there was some evidence that it damages tendons. He thought, though, that it was interesting my numbness, tingling, and nausea began soon after I took it. He also didn’t think Levaquin could cause PN because the PN would not have gotten progressively worse after I stopped the Levaquin. He did agree to read the information that I’ve been reading that connects Levaquin to PN. He gave me his fax number. Can you recommend the best research article (ie, from Dr Cohen?) that might get his attention? He insists on research that has medical authority (ie, NIH). Not sure it will change his mind but I believe it’s worth the effort. Even if he doesn’t listen to me, maybe he’ll listen to the next patient who has a similar story.

I mentioned some other possible causes to him to be tested including hypothyroidism but he said my TSH levels were within normal range and not worth pursuing. In fact, he said all the labs that were ordered (see results above) were everything that was needed to determine a cause for the PN, and since everything fell within “normal” range, that there was no need for further testing. He said if there’s been no noticeable progression of the PN, I should wait for my regular appointment with him on October 28th, so at least I have that. At that time he said he would pursue the possibility of small fiber neuropathy. I'm not sure where that will go.

Regarding B12 methyl-cobalamine, I started taking 5000 mcg per day four days ago. Each night though I was having palpitations and was keeping me up. I noticed it can be a side effect. So given that possibility, this morning I reduced dosage to 2500 mcg (broke my pill in half) and I’ll see what happens. Regarding the benefits of B12, I’m not sure if it’s the reason, and I'm a pessimist by nature, but I did not have the burning/cold sensation in my feet the four nights I took it. My last B12 lab before this was 339.

I asked the neurologist if there was anything I could do for my PN symptoms in the meantime such as supplements. He said I could take a multivitamin but to avoid zinc and B6 (I don’t remember why). I told him I was taking B12 and planning to take Acetyl Carnitine and CoQ10. I’m planning to begin Alpha Lopaic Acid (600 mg), Acetyl L Carnatine (750 mg in three increments) and CoQ10 (Ubiquinal) (100 mg).

I take my B12 in the morning on an empty stomach.
I never get any energy or side effects from it either.
My last reading was 1999 after trialing the new Puritan's Pride methylcobalamin so I know that brand works well! ;)

Without any B12 my tests are in the 800 range.

Here is a link to my fluoroquinolone page:
http://neurotalk.psychcentral.com/post661103-2.html

Dr. Cohen's link is on there too. He did a study himself on his patients and their side effect profiles.

If you read Dr. Cohen's website he has an interesting study on statins and how doctors IGNORE their side effects, because the drug reps do not tell them otherwise. Some doctors still trust the Big Pharma reps when that trust is very misplaced. The drug companies often do NOT publish their negative study results and only do so when compelled. (NY state forced Glaxo to reveal their negative studies on Paxil, for example, which were considerable and damning for children).

Doctors remain totally blind to the toxicity of statins today, even when published accounts detail them, for this reason.

Here is Dr. Cohen's article on side effects: (statins)
http://www.medicationsense.com/artic...cts012108.html
Dr. Cohen BTW teaches in medical school too.

Here is one paper on fluroquinolones and nerve side effects:

from:
http://www.ncbi.nlm.nih.gov/pubmed/8722551

Like with many other drug information papers, this one is from Europe, where the Big Pharma influence is less.
The original information on estrogen replacement risks for menopausal women came from Europe up to 10 yrs before the HERS studies were done here (independently) of the Ayerst company who dominated positive benefits in US. As a result
estrogen supplement therapy has lost its popularity here finally but many women died from heart attacks and strokes before the truth was revealed, in US.

Don't get me started on this.... I've posted alot about deceptive Big Pharma, over the years! ;)

MrsD, I will fax information (including the paper from Sweden) to my neurologist that connects levaquin to PN. I asked for his reaction. In the back of my mind I’m preparing for a confrontation and request for another opinion or referral to another neurologist. I’ve never had to go outside the system so this is new to me. If you can point me to any reputable neurologists in Ohio who might listen I’d certainly follow up on it.

I am taking B12 on an empty stomach per your recommendation in other threads. I take it first thing in the morning and then eat some breakfast an hour later.

Speaking of supplements, does the following regimen sound reasonable to you? I started the B12 methyl-cobalamin a week ago. I just received these things from Puritan Pride and iherb a couple days ago: CoQ10 (Ubiquinol) (100 mg), Acetyl L Carnitine (750 mg in 250 increments), and Alpha Lipoic Acid (600 mg). Even though I’m not sure it’s the cause, I’m mainly concerned about the toxic effects of levaquin that cause PN in some people.

I believe the Puritan Pride sale (buy 1 get 2 free) on CoQ10, Carnitine, and others ends Thursday, September 22nd. So I might submit another order before it ends.

Your choice of supplements looks good. Covers the mitochondrial bases. It may take time to get results, I'd give it 6mos.

I'd add in magnesium and fish oil...since both really help nerves heal. These are much less expensive than the others you have purchased.

If you really want to read about drug toxicity, see if you can find this book: Bitter Pills by Stephen Fried. I read this book when it came out. It is about the damage his wife suffered from Floxin (which is not used much anymore, but Levaquin is chemically derived from Floxin!). She developed seizures that did not resolve from that drug. When this book was written, some knowledge about CNS toxicity was known about the fluoroquinolones. But now, so many people have been damaged, the net is filled with sites, and blogs about it.
You might find this book "used" on Amazon for a very low price.
http://neurotalk.psychcentral.com/sh...hlight=magnets
This book goes into how difficult it was to get a black box warning or ANY actions at the FDA at the time when postmarketing severe drug reactions occur. It is really an eyeopener!

Amazon:
http://www.amazon.com/Bitter-Pills-I...6602485&sr=1-1

I often buy used books from their alternate sellers listed, and often they are really a "deal" and all of them so far have been in excellent condition!

After reading this book, you may loan it to your doctor! At this time doctors really will not speak against another doctor's treatments. So response to YOUR questions will reflect that tight lipped factor. They will NOT admit to an error of judgement and risk a trial or liability action.

status of supplemental regimen while I await next appointment
 

MrsD, thanks again for the info. This is an update while I wait and prepare for my next appointment on Oct 28th. I will pursue the possible Levaquin cause, my upper end TSH numbers, A1C testing, and small fiber function, with him. He said he will focus on the small fiber function which hopefully will lead him to those potential causes. In the meantime I started the B12 methyl-cobalamine on Sep 16 (5000 mcg/day) and quit on Sep 21 because of palpitations. The palpitations stopped 22 Sep (unless I was just so sleep deprived I slept through them). I restarted the B12 on Sep 23 thinking there might have been some other reason for the palpitations but, unless it’s all in my mind, they started again and I stopped the B12 again yesterday. Can the palpitations be due to something else? thyroid? It’s frustrating because even after a few days I could sense my nerve condition was improving slightly with the B12, not as much pain, less numbness for longer periods. The nights after I stopped taking the B12 were bad with sharp pains in my toes, hot feet. I’m thinking of starting B12 again but in 1000 mcg/day. It was working with 5000 mcg, but I couldn’t sleep with the palpitations. I started fish oil on Sep 23. I applied the CVS Epsom Lotion to my feet twice in the past week and it makes them feel better. I want to begin the ALA, ALC, or Ubiquinol but I haven’t yet because I didn’t want to attribute any side effects to the wrong supplemental, if that makes sense. I wanted to get the B12 working without the palpitations. I’m tempted to start taking them anyway because the sooner I start, the sooner I hopefully would see results.

It is difficult to say. The B12 does energize some people.
If you have an underlying cardiac condition, it may be too much.

Stay off the B12 for a week, and see if you get the palps any time during that period. Take one tablet (swallow) and see what happens. If this is the 5mg, try cutting it in half?

I do see my cat Oreo getting pretty lively on her new B12 regimen too. She was tentatively diagnosed with lymphosarcoma yesterday at a tertiary vet clinic. Samples of cells were aspirated from the tumor and sent off. Her prognosis is grim now.
But the vet there said to continue her B12 as I am doing. 5mg methyl orally twice a week. She weighs 8 lbs. The vet had heard a murmur before the B12, but now the murmur in the heart seems silent. She seems more involved in life since I started her. (she had a parasite treatment, and they think her intestinal absorption of B12 was impaired by that).

The heart will race when your blood pressure falls. That can happen with some blood pressure drugs, esp the ones that dilate blood vessels. This is a compensation for the falling blood pressure.

But it is hard to say what is going on with you. You may only need B12 2 or 3 times a week, or not at all. You may not need 5mg either. So go a week without and see if you have the palps.
If not if you choose to restart start at 1/2 of what you were using before, and see what happens.

MrsD. I’m sorry about your cat, Oreo. I never liked pets until my wife talked me into bringing home a puppy, Lizzy, about 5 years ago. I love dogs now and don’t know how I ever lived without one. :)

I’ll go without the B12 for a week per your suggestion. Then I’ll pick it up again at 1000 mcg every other day instead of 5000 every day and see what happens. I have no personal or family history of cardiac or blood pressure problems. Not taking any medication for anything. I was in great health until this PN business started close to 2 years ago now.

Update
 

I had another visit to the neurologist on Oct 28th. My PN had progressed to lower left leg and left side of face since my telephone consult with him in mid Sep. It’s not severe there yet but noticeable and comes and goes. I already had the numbness and occasional sharp pains in my feet and hands with hot feet at night. While waiting for Oct 28th to arrive, I began B12 (methylcobalamine) at 500 mg/day in mid September (reduced it to 100 mg every 2 days because of palpitations and insomnia at night). I added the following supplements on Oct 1st: ALA 600 mg/day, ALC 750 mg/day, Ubiquinol 100 mg/day, and Fish Oil 3000 mg/day. I noticed improvement in pain and hot feet just a few days after I started the B12 and more improvement by mid October after the others supps presumably kicked in. I still have mild numbness in the feet but hot feet and occasional sharp pain are noticeably reduced. Thank you Mrs D. I told all this to the neurologist on Oct 28th. He said the B12 and ALA may be reasons for the relief but he didn’t see the usefulness of Ubiquinol, ALC, and Fish oil related to my PN. I will keep taking them nonetheless. I asked him about the possible relationship of some joint pain I’ve been having (at the bases of my big toes and thumbs). He said that shouldn’t be related to PN but I noticed he ordered a Rheumatiod Factor test. He also ordered the following tests that were not ordered the first time around (post #1). I took these tests earlier this week and I’m to call him back in one month for a discussion of results, apparently because it takes time for some of these to come back:

1. SPEP/IFE (serum protein electrophoresis/immunofixation electrophoresis) Paraproteinemias – amyloidosis, Multiple Myeloma
2. 2-hour GTT (Diabetes mellitus/impaired glucose tolerance)
3. B12/MMA (methylmalonic acid)
4. B6 (pyridoxine)
5. Rheumatoid Factor
6. Vitamin E

I requested additional testing for thyroid disorder since thyroid can be a PN cause but he said there was no need since my TSH was “within range”. My TSH is actually at the high end of the generally accepted range. I’ll keep the more aggressive thyroid testing request in reserve and push it again later. He also continues to discount the possibility a toxin caused my PN, specifically the Levaquin I took for 8 days back in Oct 09. He said there’s no way to test for a toxin and, besides that, he believes the symptoms would have gone away after I discontinued use. I’ll also keep that one in my hip pocket until I see the results of above tests.

I also visited my PCP yesterday for a heel bruise that hasn’t healed for two months, the joint pain I mentioned above, and the palpitations I’m having that keep me up at night and I believe still have something to do with the B12 and maybe also the ALA (I’ve researched side effects for those and one side effect for both is palpitations). I’m seeing a podiatrist for the heel bruise tomorrow. For the joint pain, the PCP said I should wait for the Rheumatoid Factor test results. For the palpitations, she agreed it’s probably just a matter of adjusting my supplement dosages. However, funny she did mention that it may have something to do with my thyroid and that more aggressive testing might be necessary! I’ll remember that. So my goal this month is to find a supplement dosage low enough to eliminate the palpitations at night but high enough to continue the pain and hot foot relief too. While in her office, she told me the B12 lab that the neurologist ordered had come back at 508 when last summer it was 339, so I attribute that to the B12 supplement I have been taking at 100 mg every 2 days.

I find that R-lipoic acid (ALA stablized) makes me hyper at 200mg a day.

It does not do that at 100mg a day however. When I started it a couple years ago, I had to start at 50mg a day.

Fish oil has anti-inflammatory actions and so if you have inflammatory issues -- some form of arthritis-- it is helpful.
I think some PN may be inflammatory, and hence that is why AlkaSeltzer with aspirin works for some PNers.

There is over a decade of research on ALA for neuropathies.

The carnitine and CoQ-10 help with mito issues, and improve energy production in the cells if the mitochondria have been damaged by drugs or toxins.Many anti-aging products and articles recommend them. It is very possible that our own synthesis of carnitine fails with time/aging.(just like everything else seems to!)

I hope you stopped the B12 before the testing. At least 3 days before ...so your reading would be more accurate.

I am glad for you that you are feeling better. It is obvious that you are healing in some way, so I'd keep your regimen up!