Hi all,

I'm new to this forum, but not to peripheral neuropathy. Mine was diagnosed in 2009, after an EMG, but no definite cause was ever found. I'm not diabetic, and extensive MRI/CT Scans and Spinal Tap ruled out most causes.

My Rheumatologist speculates that it may be prolonged use of an antibiotic from 2007-2010 that is known to cause PN.

I was just glad that is hasn't progressed, since at the time it was found I had no idea what would happen.

I have several other conditions, but this one, PN, is the most disabling of all. And to top it off, my family can't 'see the problem' and tend to think if I 'tried harder' I would be able to walk more and do more.

How do others handle their PN?

Hugs, ElaineD

Welcome to the community. I'm fairly new but have received a lot of support and information from these wonderful and knowledgeable people.

My neuropathy (feet and hands) started a month after my chemo ended (Mar 2013). I actually didn't know what was wrong at the time. My grown children were great and understanding but my husband didn't come on board with my problems until he saw my skin punch biopsy and took me to a few dr's visits. He thinks if your arm is not cut off and blood is spurting everywhere you're ok....lol....and no, they can't actually SEE the problem so it makes it hard for them to understand.

I'm sure my fellow readers will get tired of me telling this story but....my mother is 82.....she walked over to the recliner one day, looked at my feet and said "Well they look ok"....thanks Mama ! She said it in a kind way but it was funny.

I went from a very active, working mom and Grammy to staying home 99% of the time. This has all happened in 6 months time. Reading up on PN may help them understand better what you are going through.

Good luck and please keep us posted.

Debi from Georgia

Do any other family members have anything similar to what you have? Thanks.

I took a common antibiotic for chronic UTIs. It turns out that all of the antibiotics for UTIs have a rare but clear cluster of side effects that involve peripheral neuropathy, up to and including death.

One of the effects of the PN is that my toes are dusky purple, due to poor blood supply due to poor nerve conduction to keep the blood flowing. My feet are usually icy cold, although very occasionally bright pink and hot!

The first thing I noticed actually was very cold feet, and asked for a Peripehral Vascular Test on my legs, because I have severe coronary artery disease and was afraid it was affecting my circulation in my legs. But my circulation in my legs was better than normal!

I know people feel better when they change their diets…..I also know that the placebo affect works in 50% of all things tried for all conditions. I am doubtful that anything will help my PN, except if it happens to be from demyelination of the nerves, in which case perhaps Methyl B-12, which I took faithfully for a year and a half in very large doses related to my weight, might help. But I didn't find any change after a year and a half.

I'm hoping to find out here if it makes sense for me to resume to B-12 treatment. And if so, what products in what amounts and in what manner.

I have also been diagnosed with an Immune Deficiency Disorder (CVID) and have been working to find the right IgG treatment. The first product I tried, Hizentra, caused reactions and I had to discontinue. I am to start Gammagard as soon as the treatment is approved by my insurance company.

I know that PN is sometimes successfully treated with IgG, administered usually in large doses by IVIG. My doses are smaller, and I'm doing them at home subcutaneously, so I doubt if they will help my PN.

But one can always hope.

Thanks to those of who answered my post. I guess I realize that I'm not optimistic about truly changing my PN, at this point. I'd like to be, I really would.

But my research and efforts have not yielded much hope, in the way of science based treatments.

Hugs, ElaineD

I'd suggest you try the new Morton's Epsom Lotion (magnesium).
This might help your circulation in the feet. Also it dampens pain and swelling, by blocking NMDA pain receptors.

Not expensive and only at WalMart so far, and Amazon.

Many of us use it here. Apply a quarter's diameter dollop divided into 1/2 for each foot. Apply on the top of the toes, top of the foot and around the ankle on each foot.

http://www.mortonsalt.com/for-your-h...-epsom-lotion/

This is not in all stores yet. It has only been out for a few months.

PN from nitrofurantoin is "supposed" to resolve with time. Your extended use may make a difference however.

I'd really test this out...the lotion...as it provides needed magnesium to the body (which typically is low in most people) and is very inexpensive to boot.

Microbid has a significant risk for some people.

Elaine, you asked how we handle PN. I am afraid it handles us!
Some of us are fairly stable. After the initial shock and fear, you get used to a new normal. Medications like gabapenin are pretty universally prescribed as the first line of treatment and work about 30-35% of the time. They rarely cover all the pain so there is some measure of disability involved. Activity makes the pain worse for many people so they become more limited in what they do.

Some of us have progressive neuropathies. These are primarily hereditary and is why, I think, Kitt asked if anyone in your family has it. These can be evident in youth as crippling or just clumsiness and poor coordination, high arches, absent reflexes. They may not set in until middle age. Whenever they start, they do get worse and there is no treatment. This is what I have. It is primarily axonal and I have definite weakening of the muscles in my hands, arms, feet, and legs. I am experiencing a set back currently, and could happily stay on the sofa all day. Shopping is exhausting. Going upstairs, showering and dressing requires a nap.

I am still coming to terms with this new normal. I don't like it. My mother, who neither knew nor cared that I had this disease, used to call me lazy. I have prided myself on being the Martha Stewart of homeschooling mothers, raising five children, just to show I wasn't lazy. Now I can't do much of anything and the feelings of worthlessness are overwhelming. My husband is incredibly supportive, but he can't fight the demon of childhood conditioning and I have been told by my doctors that I am a poor candidate for therapy. My justification for living came from what I could do for others, and now it is mostly gone. I am not coping well right now, but I probably will adjust.

The people who have it hardest are the ones whose family do not believe they are in pain and disabled. From reading here this seems more common than it should be. Like Debi said about her husband accepting it only after her skin biopsy results. Unfortunately some people do not get hard test results that correlate with their level of suffering and this makes it harder.

Everyone is a little different, but a common trend seems to be that while the symptoms may not improve, our ability to cope seems to improve.

This really interests me, as the cause of my pn has not been discovered yet, and I have been on Macrobid probably a dozen times in my life. Actually, my symptoms began shortly after taking it the last time . I just found this on a website for the medication:

Neuropathy:

Peripheral neuropathy, which may become severe or irreversible, has occurred. Fatalities have been reported. Conditions such as renal impairment (creatinine clearance under 60 mL per minute or clinically significant elevated serum creatinine), anemia, diabetes mellitus, electrolyte imbalance, vitamin B deficiency, and debilitating disease may enhance the occurrence of peripheral neuropathy. Patients receiving long-term therapy should be monitored periodically for changes in renal function.


My creatinine levels are always abnormally low.
How can I get proof that this is the cause ? Are doctors even open to the idea ?

Sorry for making this about me, but I didn't want to start a new thread and saw that your topic was about this medication.
Best,
Silver

There are two ways of reporting creatinine.

One is the amount that appears in the urine (called the clearance).
This is done to see extent of filtering capability of the kidneys. A low figure here is bad, meaning the kidneys are not working right.

The other test is on the blood serum... it is called just creatinine.
It is taken and shows how much creatinine is in the blood needing to be removed. A low figure here means your kidneys are functioning well.

When you read about creatinine CLEARANCE this involves the filtering capability of the kidneys. It is often referred to in article about drugs, because drugs are removed from the body thru the kidneys. Poor clearance means the drugs build up in the body. Then their doses must be adjusted to account for this or that drug not used at all...a doctor's decision.

This link explains what "low" blood creatinine levels might mean:
http://www.webmd.com/a-to-z-guides/c...earance?page=3

http://www.rxlist.com/macrobid-drug/...recautions.htm

Here is the link to the information I posted.


Also, it looks like I was referring to low serum levels from bloodwork- some doctors saw it as a sign that my kidneys were processing too much, some said this means I have an excellent pair of kidneys, and a urologist said that it may be because I am very small with little muscle and do not eat a lot of protein. So it makes sense, but interesting that each doctor had a different opinion-just to make things more confusing .