[mtanker]

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

[en bloc]

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).

[mrsD]

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.

[mtanker]

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

[mrsD]

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.

[nide44]

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.(?)

[mtanker]

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.

[mtanker]

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).

[mrsD]

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:

J Antimicrob Chemother. 1996 Apr;37(4):831-7.
Peripheral sensory disturbances related to treatment with fluoroquinolones.
Hedenmalm K, Spigset O.
Source

Division of Clinical Pharmacology, Norrland University Hospital, Sweden.
Abstract

The symptoms and possible risk factors of peripheral sensory disturbances related to fluoroquinolones are reviewed on the basis of 37 reports submitted to the Swedish Adverse Drug Reactions Advisory Committee. In 25 patients (68%), symptoms occurred within 1 week after start of treatment. Paraesthesia was the most common complaint and occurred in 81% of the cases. Fifty-one per cent of the reports concerned numbness/hypoaesthesia, 27% pain/hyperaesthesia and 11% muscle weakness. Seventy-one per cent of the patients recovered within 2 weeks after drug discontinuation. Possible predisposing factors were impaired renal function, diabetes, lymphatic malignancy and treatment with another drug known to cause neuropathy.

PMID:
8722551
[PubMed - indexed for MEDLINE]

Free full text

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!

[mtanker]

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.