[lwm_rn]

Hi...my 30 year-old husband has recently been diagnosed with moderate to severe peripheral neuropathy in his feet. This all started within the last year. He has had numerous blood tests (including for diabetes) come back normal. He has had an EMG which gave the moderate/severe results. He is going for a spinal tap this week and possibly a nerve biopsy if the tap doesn't give any abnormal results.
My question involves medication induced neuropathy. You see, my young husband has quite an extensive medical history. He takes betapace for atrial fibrillation, zetia for high cholesterol/trigylcerides, allopurinol for gout. He also has a "fatty liver." He was diagnosed with Lyme disease in April but was noticing problems with his feet months before this. Is anyone aware of any link between some of these meds, particularly the allopurinol or zetia, and PN? Our neurologist seems to blow this off.
Also what exactly is he looking for with the spinal tap and nerve biopsy? The neurologist did vaguely touch on a connection with cancer. What sort of disease progression do we have to look forward to? What can we do to treat/stop the neuropathy? He is sooo young to have all this going on. I feel like maybe there is one thing that could tie all this together.
Thanks!

[MelodyL]

Hi there hon.

Welcome to our little family. You will find lots of information here. I'm a wife just like you.

Your husband sounds like he has had a rough journey. He is lucky to have such a loving wife.

Keep reading, someone will help you on this board.

All the best,
Melody

[mrsD]

This drug is reported to cause neuropathy.

While it is not common, it can happen:

Eur Neurol. 1993;33(3):193-4.Links
Regression of allopurinol-induced peripheral neuropathy after drug withdrawal.
Azulay JP, Blin O, Valentin P, Abegg P, Pellissier JF, Serratrice G.

Clinique des Maladies du Système Nerveux, CHU Timone, Marseille, France.

A patient experienced an axonomyelinic peripheral neuropathy during a long-term allopurinol treatment. The symptoms and signs regressed after drug withdrawal, and the nerve conduction velocities and distal latencies improved. The incidence of allopurinol-induced peripheral neuropathy is very low. Thus, facilitatory factors have to be sought.

PMID: 8385614 [PubMed - indexed for MEDLINE]

There are a few other reports on Medline, but they do not have abstracts I can access.

[glenntaj]

--is likely to look for autoimmune markers and/or infectious agents--either which could cause a neuropathy, depending on what is found.

It could also come out clear as a bell, though, without eliminating the possibility of autoimmune or infectious factors at work.

There are some paraneoplastic syndromes that produce neuropathy through autoimmune mechanisms--and many of the blood cancers (lymphoma, Waldenstrom's, myeloma) can have neuropathy as a concurrent or presenting symptom. I would assume (though maybe I shouldn't) that if he's gone through at least a bit of a work-up, he would have been checked for obvious signs of these--have they done a peripheral blood smear and cell typing, and an immunofixation electrophoresis of serum and urine (to check for the monoclonal or M-proteins associated with blood cancers and neuropathy)?
This reminds me--always good to put in a plug for getting copies of all of your and your husband's test results, and to organize them using the Liza Jane spreadsheets:

www.lizajane.org

Much easier to track results/patterns and to suggest other possible tests to physicians who otherwise might not think of them.

[cyclelops]

I am a former Lyme case, physician diagnosed at the time, and with an EM rash as well. It has been 14 years, and I have read that Lyme is associated with PN, but that doesn't help you much unless you have an active case of Lyme, as it is simply dubbed a 'post Lyme'. A PCR for the Lyme organism from spinal fluid, is often used to rule out current infection. A positive blood titer does not mean you have current infection, only that you produced antibodies to the organism at some point in your life. What is a current infection with Lyme, and how to diagnose it remains very controversial.

I would assume he is having a biopsy for Amyloidosis, as he is young for fatty liver.

Small fiber neuropathy is best diagnosed by epidermal nerve fiber density biospy, which involves taking punch biopsies of skin rather than sural nerve, unless for some reason, the doc really wants to see that nerve. Docs are of the growing opinion that if they don't need to take Sural Nerve they don't, because it can cause some permanent effects. That said, your doc may need the Sural Nerve for some reason...but I would research that first.

Epidermal Skin Biopsy for Never Fiber Density can often be the only positive finding, when EMGs and Nerve Conductions Studies are normal. It sounds like your husband already has some abnormal tests.

You can have a heck of a bad case of Small Fiber Neuropathy and be normal on a lot of those more routine tests, as in my case.

I suggest going to a Tertiary Medical Center (often associated with a Medical School or Research Facility), with a good Neuro Dept. I muddled around with a local, but large clinic for 10 years when I should have gotten myself to a better medical institution, and I am worse off because of it. There is a lot I would have, and would not have done had I known I had Neuropathy.

I can't tell you how many carpal tunnel tests came back inconclusive yet my hands were numb or tingling or in terrible pain for a decade....'borderline carpal tunnel'..."Here have another wrist splint." approach.

Check out his medications online for neuropathy as a side effect.

Glenntaj has a ton of good info. Oh, and on the paraneoplastic syndromes, small cell lung cancer has the highest correlation to paraneoplastic PN coming on as the presenting symptom, but several other cancers can present with PN. It could also be a purely neurological phenomenon and have nothing to do with cancers. There are many, many reasons for PN, and several types of PN.

And lastly, a good quarter of PN is Idiopathic...which means a cause is never found; diabetes, thyroid, autoimmune disease and a huge number of diseases have PN as a symptom, so don't panic. Toxicities are a possibility as well. It is hard when you get the news and we all jump to the worst possibilities. Diagnosis will likely be a process that takes time. It is hard, I know, and my telling you to relax won't help, but keep in mind, it isn't always a worst case scenario. It does feel that way, tho. Keep the faith.


Feel free to PM me.

[cyclelops]

Hey MRSD

Would a 'Yellow Jacket' motel work to trap the nasty critters and let your 'hummer' eat in peace? Just so she can't get into it....take a look at one and make sure she can't use it, or, well, it would not be good....I think it would be OK for her, as the hole to get into the 'Motel California' is small and once you 'check in you can't check out'. I use the fly motel and the yellow jacket motel, both outside....that fly motel really reaks like a garbage can. It is poison, and not for use around people....I am not a fan of pesticides or herbicides, but when you live down the road from a corporate farm flies are like exterior wallpaper. The fly motel is the lesser of two evils and it beats spraying the house so we can all breathe in a neurotoxin. And yes, we use the old fly swatter.

I could never work with 'medical maggots' and the mere suggestion of treating some one with them makes me, well, nauseated, to say the least.

[mrsD]

but we have tried 3 types of yellow jacket attractor traps. They don't work.

I have used a electro-wand to stun them and then catch them in a net and brain them with a rock. This works sometimes.
But exposes ME...and this year I was not up to it.
http://www.shop.com/Lentek_Electroni...85380-p!.shtml

We didn't get many hornets this year until near the end.

I am very allergic..so I have to be in the mood to zapp them and crush them.

The place we had the feeder this year was in a stand of evergreens and very
protected. I did go out twice with a bug killer, and fog them away from the
bird area, since they were near the ground and attracted to the drips that fell.

The last stinging event I had was pretty scary, so I didn't feel up to it this season. And in the end (there are 4 ports on the feeder), this distraction did allow me to get some photos, which I might not have gotten otherwise.

As it was, it was a trial of patience to get the few photos I did. I guess to be really good, I should construct a "blind" of sorts...but we are not that organized! LOL

We used to put up a "fly" jar... this is a borate solution with meat scraps, and it used to get flies like you wouldn't believe. But then the BEAR started coming attracted by the stench...so we stopped the "fly" jar, 3 years ago, and no bear since. You can't imagine (or maybe you can!) a large mayo jar filled with throbbing flies...it was so GROSS, it created many arguments as to WHO would clean it/empty it for next season! LOL

[MelodyL]

Bears, flies, maggots, OH MY!!!!!!!!

lol
Melody

[aloneouthere]

LWM RN, what are your husbands symtpoms exactly? This might give us a better idea so we can recommend the right meds/vitamins. Moreso vitamins than meds, since we aren't doctors, although some of these guys know wayyyyyyyy more than some doctors.

[Roxie2007]

HI LWM and Welcome!!
I had the nerve/muscle biopsy in June and that diagnosed my Chronic Axonal Neuropathy.
My dr. said it's very hard to find a good surgeon to do this biopsy and he has only one dr. he trusts to do it now. He said so many times when a biopsy is done the tissue/muscle/nerve isn't properly prepared for the trip to the lab and then they can't use it! So you might want to ask if this surgeron has done a biopsy before and his success rate!
My biopsy was done behind my ankle bone on the back/outside of my left ankle. I haven't been able to wear reg. shoes comfortably since the surgery, only able to wear sandals. I think it's just the location where it was done that caused this, BUT I wouldn't have been diagnosed if I hadn't had this biopsy so I'm glad I had it done.
I hope your husband gets all the tests he needs to get his PN under control.
I, and many here on this forum, get IVIG infusions weekly to help with PN, maybe your husband will qualify for that also.
Keep us informed how y'all are doing!