Saturday, May 05, 2007

On Pins and Needles

It's been a while since I last posted. A lot has happened. A lot of Good has happened.

In my last post I mentioned that I had been feeling blue, and had been having a lot of doubts about myself. I even wondered if I might be suffering from depression. I think I have gotten over that hump. Some things have really changed for the better. Other things will be changing for the better in the near future. There is light at the end of the tunnel, and I don't feel so helpless, or hopeless anymore.

In my last post, I mentioned that I was about to undergo an EMG test -- which tests nerve response. Let me say, now after having undergone this test, that if you are about to have this test, that you should be prepared to become a human pin cushion.

When I was escorted into the exam room, I got to dress up in one of those delightful hospital gowns.

Next thing I know, the doc comes into the office sharpening his needles like a chef wielding his knives at Benihana. He explained that these were very small needles -- only 26 gauge!

I'm here to tell you that 26 gauge or not, by the time you get poked more than 50 times by these needles, that they all feel like blunt pencils being shoved into you!

The doc was accompanied by a very nice, and very young, medical assistant. She was all of about 20 years old. Take nothing away from her, she did a very good job of working the very complicated diagnostic equipment. As it turns out, she was from the small town of Fredonia, Arizona -- and was very impressed that I actually knew where she was from. I told her of a trip our family took a few years ago to Kanab, Utah. We went through her home town on that trip to the North Rim of the Grand Canyon.

The testing started out with a few "warm ups" for my nerves. The idea being that the test would better gauge my nerve responses if they were properly "warmed up" prior to the testing. The doc stuck a needle in my leg just below the knee, and another one in my ankle. Then they hooked a couple of alligator clips onto each needle and sent a "mild" electric shock through them. Next thing I knew, my leg was uncontrollably kicking. Then another set of needles were inserted above and below my ankle, and the electric shocks were sent through, and my ankle started flailing about like a fish out of water. Several other nerve groups were "warmed up" too. Now I was ready for the real test to begin. To be honest, I had had just about enough during the warm ups alone!

The needles for this test were always inserted in pairs. Every time a test was run, it had to complete a circuit. All the nerve groups from the lumbar area of my back down to my toes were tested. This included the rather indelicate testing of the nerves in my gluteal muscles. Let's just say that the medical assistant deserves to get combat pay. She had to see places where normally the sun doesn't shine -- we're talking the dark side of the moon here folks!

Another thing about the test. You not only have the pain from the prick of the needles, but when the electrical charges pass through, they have to turn up the current, until basically, it starts to hurt like heck. I always knew if he got a good reading or not, because if it didn't hurt, it didn't read.

As the test went on -- first up and down one leg, and then up and down the other -- we chit-chatted about various things. We (the doc and I) talked with the young medical assistant about her hometown of Fredonia, an how it is the gateway to the North Rim of the Grand Canyon. As it turns out, her parents own cafe's in Fredonia and in Kanab. We continued gabbing on about various other things -- which helped to pass the time during the test -- AND helped me to keep my mind off how much pain I was experiencing.

At one point about half-way through the test, the doc asked me if I was enjoying myself. I had to answer with an honest, "No, not really." I think this poor doc is beginning to get a complex about not being very well liked by his patients. He looked rather resigned when I gave him my matter-of-fact answer. It is my understanding that this doc specializes in these kinds of diagnostic tests at the Spine Clinic. This doc has a really nice bedside manner -- for a guy who is constantly needling his patients all day long. (Pun intended!)

We kept on chatting through to the end of the test. Although I was in pain during the test, I tried to be as pleasant as possible throughout the procedure. I didn't yip, or spit, or curse, or anything! Near the end, the doc commented that I should be teaching a patient education class about proper decorum and behavior for an EMG test. I guess some folks really have some negative reactions to being poked, shocked, and jolted like that. I like to think that I proved to be a welcome respite for the doc and his assistant from patients who might have a very unpleasant reaction to this test.

The results of the test were kind of mixed. The good news was that I don't have any serious nerve damage coming from the nerve roots out of my lower back. He did find that I might benefit from a steroidal injection to the left side of my lumbar area. That surprized me a little, because I feel like I am having more trouble with my right side than with my left. Especially with my right leg going numb after being on it form more than about 15 minutes at a time.

This test also confirmed what I already knew to be true. I have peripheral neuropathy in both of my feet. Although my symptoms were consistent enough for a diagnosis of peripheral neuropathy, this was the first objective test that definitively proves that what I am suffering from is in fact neuropathy. This diagnosis also came with a bright side. He told me that the nerve "wires" were not damaged. The problem stems from the fact that the sheathing around the nerves has been damaged. This results in far too much input being received by the nerves, which results in the weird combination of numbness, tingling, a burning sensation, and pain.

Since the problem is with the sheathing, and not the actual nerve itself, that means that there is a chance (but no guarantee) that in time, the sheathing could re-generate, and this condition could diminish, or go away altogether one day. The time period for this potential regeneration will not be measured in weeks or months - but probably years. Maybe as much as 5 years.

It's now been about 1 full year since the onset of this condition, which was a result of a side effect from the drug Flagyl. Flagyl is a nasty drug, and is only used in extreme circumtances -- which I was in a year ago. I have since learned some really nice things about Flagyl. Here are some excerpts from a statement on Flagyl from the FDA:
WARNING
Metronidazole (Flagyl) has been shown to be carcinogenic
in mice and rats. (See PRECAUTIONS.)
Unnecessary use of the drug should be
avoided. Its use should be reserved for the conditions
described in the Indications and Usage
section below.

And then there is this regarding peripheral neuropathy:
ADVERSE REACTIONS
Two serious adverse reactions reported in patients
treated with Flagyl (metronidazole) have been convulsive
seizures and peripheral neuropathy, the
latter characterized mainly by numbness or paresthesia
of an extremity. Since persistent peripheral
neuropathy has been reported in some patients
receiving prolonged administration of Flagyl,
patients should be specifically warned about these
reactions and should be told to stop the drug and
report immediately to their physicians if any neurologic
symptoms occur.

I honestly don't remember if I received this warning or not about Flagyl. I did call my then Dr. at the time (no response from him for a couple of days). With no response from my Dr. I called the home health care pharmacist. I explained that I was having this constant pain and numbness in my feet, for about the last week, and I wanted to know if any of the medications I was taking might be causing this. He promptly looked it up, and said that Flagyl might have that effect. He told me to not take any more of it until he could consult with my Dr. Somehow, he was able to get through to my former Dr. (when mere a mere patient couldn't get through) and confirmed with him that I should stop taking this drug.

I don't harbor ill will for the Dr. Flagyl may very well be responsible, at least in part, for saving my life. It's true that I have since changed doctors, because I felt like he was too slow to act, and not aggressive enough when my health was headed for crisis. If I wanted to, I could point the finger of blame for getting me into that crisis in the first place, and blame him for the after effects that may hamper me for years to come, if not for the rest of my life.

For now, I rely on heavy doses of neurontin and and ibuprofen every day, just to keep my neuropathy controlled to the point that I can function.

So the EMG test confirmed what I already knew. Not that it really makes a difference. However I now have proof, if every anyone questions me, that I really do have peripheral neuropathy. It's not just in my head --- its in my feet!

16 comments:

T. F. Stern said...

I guess you can put down that you have been an official lab rat on your next job application.

I still have damaged nerves in my right arm and hand. I talked with a few friends who have had similar issues and they have told me that sometimes it takes from 6 months and often times years for "sheath" damage to repair itself.

On the bright side; I had sliced a nerve in my left ring finger as a result of my wedding ring being crushed into my finger and almost cutting it off. I lost feeling in that finger and kept my wedding ring on my key ring for years because it rested on the place where the nerve ending was very sensitive. After several years it healed and now all I have is the scar. I have normal use and feeling and my wedding ring on too.

Keep your hopes up and don't let anyone "needle" you. lol

David B. said...

Thanks TF. That's encouraging to hear that sooner or later the sheathing will repair itself. Your thoughts help to give me hope.

I hope your health is doing better now. I know you had a little excitement a while back.

T. F. Stern said...

David,

I go in this week for yet another MRI and then I am to see two more specialists the following week. Thank you for keeping me in your thoughts as well.

Woody said...

Oooookay, so what you're teaching me here is that even if I think I have palsy, I am NOT going to ever get an EMG test.

Ever.

I think I prefer my ganglian cysts, thank you very much.

Glad you're doing better, though!

And, t. f., I also had a finger nearly crushed in a garage door hinge. No trouble at all, a dozen years on. In fact, I believe I recovered from that mishap within weeks.

One just never knows, with human bodies.

Tigersue said...

Well I am glad you are getting answers. I do say it is too bad that they did not tell you want to expect from the onset.

Anonymous said...

Hi,
I have been experiencing a buzzing sensation in parts of my body including my feet, hands, elbows & back. It started at around New Years this year and I had just finished taking a course of Metronidazole.
I have had several apointments with a Neurologist and had have had an MRI and large nerve test, but both failed to show anything. I have been very afraid, thinking that I might have MS or cancer.
Today I booked up for a small nerve test and was searching the web for information about what it would be like, when I found an article that said that Metronidazole could cause nerve damage.
Now I'm really hoping that is what has caused the problems and I'm hoping that it will go away eventually.

I'm now searching for more information about it and found your blog entry.

I understand how depressing and scary undiagnosed symptoms can be.

I wish you all the very best and that your nerve sheaths heal soon.

Thank-you for sharing your story,

Kathryn

esther summerson said...

David, I came in to look at the pics of you and your Grandfather haying. How enjoyable. I'll keep checking in, if you don't mind.

Maren said...

That whole experience just sounds awful. I am not fond of needles in any fashion. Yipes. Glad it's over with and hope that your nerves regenerate. What an ordeal.

Maren

Lisa M. said...

This post made me laugh and frown.

Goodness- At least you have conclusive evidence.

the.joyful.one said...

Hello. I know this post is a few years old, but I found it while googling metronidazole.

I don't have any idea how you're doing now, but if you're still having pain and tingling, I have a suggestion, if you don't mind. The myelin sheath (the sheath around your nerves) is made up almost entirely of high-quality fats / oils. One of the best ways to improve the health of the Myelin sheath is to take a good deal of fish oil, and maybe balance it out with some Evening Primrose oil (but that's not completely necessary). I'd recomend Carson's fish oil, as it is a very pure, well regulated source, and can be found at places like iherb.com or vitacost.com for WAY cheaper than at a drug store or something.

Hope this is helpful, or that you're simply doing better anyways and don't need it at all! (btw, I have no vested interest in fish oils or Carson's).

CMac said...

Hi

This is sounding very familiar to me and I would love to know if I'm having the same experience as you. I was put on Metronizadole ( Flagyl ) for a very persistent abscess and within 3 days had a massive reaction to it including most of the stuff on the side effects list and a number of things that weren't ( yet if you googled it people were experiencing it in great numbers ).

I have since then and after a number of other courses of antibiotics, had really serious problems down my right side. It's very slowly easing, but I still get pain right under my armpit, heat and numbness/tingling down my arm, leg, and in my finger and toes. this includes an odd cotton wool feeling between my fingers and toes.

I also get dizzy, I feel like my vision has changed ( from right dominated to left ) and I occasionally wake up in the middle of the night with my right eye moving rapidly. Today, in fact, my right eye feels odd, inflamed and it feels like I'm getting eye strain really quickly, and I got woken up with the eye movements last night.

I too have been afraid it might be MS, in particular, but I have always had a sneaking suspicion that that nasty drug Metronizadole may be the culprit. My doctors and neuro have been generally unresponsive so far, Ct scans ( with dye ) and MRI brain scans have all come back clear. So I'm totally in the dark.

Does this ring a bell with you at all?

David B. said...

CMac:

It has been 5 years now since I was put on Flagyl. It has been nearly 4 years since I had the EMG test.

I had hoped that the sheathing on my nerves would have regenerated by now, and that my peripheral neuropathy would have been a thing of the past.

But alas, it is not so. My neuropathy is no better now than it was back then.

The only way I can tolerate it is by taking the maximum dosage of Neruontin (1200 mg, 3 times per day). The neurontin calms down the intensity of the buring, numbness and tingling to a tolerable level.

My feet always feel like I am wearing a pair of socks, even when I am barefoot. When I wear shoes, it always feels like there is some sand and gravel in my shoes.

I hope your symptoms clear up for you. I wouldn't wish this on anyone.

Kate said...

Hi David,

What a terrible experience you have had. I am so sorry to hear about it. Truly. I have had somee effects from Flagyl as well - I believe anyway. I just saw the post by CMAC and have experienced similar symptoms as him after taking Flagyl. Do you know how I can contact him to check on the status of his symptoms?

Praying you are well-
Kate

David B. said...

Hi Kate:

Thanks for your thoughts and prayers. Unfortunately, I don't have any way of contacting CMac other than through theses Blog Comments. I don't know if he is still following this discussion here or not.

I hope things improve for your own health situation.

Now days I always list Flagyl as a medication to which I am alergic whenever I am seeking medical attention. That way, they will never give it to me again. I recommend that you do the same in the future whenever you go to a doctor, or if you are ever hospitalized.

My best wishes go to you, and I hope your symptoms are only temporary, and will soon improve.

PixelModus said...
This comment has been removed by the author.
CMac said...

Hi

CMAC here. I've been thinking about this post and your good self over the last wee while. I've got some good news and hopefully something to try and alleviate your problems.

First off, I'll say that we're pretty certain what the cause is now, and for the most part it's going away.

I have celiac disease, triggered either by the infection or moremlikely by a double dosemof metronidazole and coamoxiclav which wiped out all my stomach bacteria, basically i got desperate and started a food / symptom diary.

It took a while, but eventually I it became apparent that wheat was causing all my symptoms. Celiac disease very commonly causes neuropathy among a range of other problems. Since cutting out gluten, I've improved dramatically, the nerve pain only returning when I accidentally eat gluten again.

The full story is a long one but suffice to say, I'd highly recommend researching celiac disease and trying to see if it fits for you. Going gluten free has even rid me of lifelong problems, such as chronic asthma. It's been a revelation.

Just remember one of the key triggers for latent celiac disease is a lengthy infection, and one of the common symptoms ( due to malabsorption of key vitamins ) is neuropathy. Obviously alongside stomach problems.

I hope this can be of help to someone with similar problems.