What's ur reason of neuropathy?
 

Hello,

I thought if people here can tell what their neuropathy is linked to it might help direct to a cause in others like me.

Thankyou
Tips

Everyone's is different....there are over 100 triggers!

I have posted mine many times, and so have others. You can use the search function to find those posts.

Mine was initially low thyroid functions, and now I have insulin resistance. (and osteoarthritis to cloud the issues more).

Thankyou mrs D you are right about so many triggers.

Don't know what started with me but I think
There is possible autoimmune factor as I have allergies and eczema.
Maybe toxic made it worse as flu shot did make it worse.

Mine is diabetes related but also had a bulging disk in L5S1 that required surgery. I think the sciatic issues that were caused by my back make the neuropathy worse in my left leg and foot than in my right.

Mine was a real easy diagnosis....failed back surgery. Most people find thiers is far more difficult to identify.

Best of luck to all of us!:hug:

Mine is idopathic, which is annoying to say the least. A doc at Johns Hopkins told me that the paralytic drugs that were used in the 80s have been linked to polyneuropathy. I spent 5 days in a coma in 1980 but no symptoms for 28 years is a little bit of a strech.

Mine is idiopathic sensory-motor peripheral neuropathy, I was just diagnosed on July 29th, 2010. By looking at the other posts it can take a long time to find a cause if they ever do. So I am going to keep looking for answers. Good luck!

Lynn01

You have sensory and motor involvement so do you get cramps and or twitching with it.

Thanku

Sometimes cramps in the feet, my toes will cramp sometimes and look distorted. not really twitching of muscles. My legs feel like rubber at times, it's just not a normal feeling and my left knee feels floppy and my ankles feel weak. I have mild tingling and numbness in the feet and occasional sensations about midway up the calf.

Okay thank you Lynn.

It can manifest differently in everyone I guess.

For example my left leg. Inam felling prxhes of numbness to stocking feelin to migrating stabs to in and out crMps to sudden twitching which can be one twitch to like a machine gun goin off. Always feel the twitch coming agterthe severe stabbs. So I have severe twitching too which is not painfull. And they can be in Tiniest fibers like a dot of an area or huge muscles. (now this happens head to toe migrating or All at same time)

Many toxic neuropathies (including drugs), resolve when the drug is removed.

It is far more statistically likely that the drugs you take now (or in the very recent past) are culprits. The list of drugs that cause PN used TODAY is becoming longer and longer. Some drugs taken for long periods of time, years, permanently damage nerves. Others like fluoroquinolones can damage quickly. Millions of people have taken Cipro and Levaquin since they came on the market alone. There are websites devoted to these all over the web.

i am officially ideopathic although i know it has a toxic cause due to exposure to numerous toxic substances(not medicines) nine years ago. By the time i realized what i had was PN it was really too late to test for those substances.

Tulips i have sensory motor PN also and i also get fasciculation in my leg muscles often. I also get muscle jerks in my arms and legs. The strength in my legs and arms has not diminshed that much. I also get severe cramps if i dont keep up with taking magnesium or drinking enough water. My toes will also cramp if i contract them. My feet are pretty much dead numb now with numbness going above my knees. At the same time though when i stand or walk it feels like i am walking on broken bones.

If neuropathy is caused by meds can it ever heal.

I think mine could be autoimmune or hereditary since sister with ms plus my history of allergies and eczema.

If skin biopsy is normal does that mean I don't have sfn or does it mean there isn't damage yet?

Your first question:
Some drugs (HIV drugs and chemo) do recover if the patients use acetyl carnitine. These two families of drugs cause PN.
I have not seen studies on healing PN from Statins. (some people who come on these boards, have improved, others not.)
Drugs like Flagyl, some posters here are not showing improvements. Fluoroquinolones I have posted anecdotal information on my Subforum thread.
I have seen reports of improving alcoholic induced neuropathies with B vitamins, and diabetics are in the studies currently using
alpha lipoic acid and acetyl carnitine and benfotiamine (a form of B1).

Your skin biopsy results only shows a window of time when the biopsy is taken. It does not show what you had before, or what the future holds. The results are averages just like for blood testing. It will give an idea, but nothing definite.

I think you need to start that gluten free diet while you wait for results. If your culprit is gluten, you can see small improvements within a month.

You absolutely must read more and study up. Much of what you can do will have to come from YOU, and not doctors.
Check out the stickies on our Gluten forum for excellent links to help you. There have been many people here over the years with gluten induced neuropathies who have improved and moved on to the gluten free communities on the web.
There have been a handful of misdiagnosed MS patients too.

This site has a special section on gluten intolerance inducing neuropathy:
http://sites.google.com/site/jccglutenfree/

Thank you mrs D

A lot of this stuff goes over my head. Any case will read on. Most of every test I researched and demanded. They were about to do a genetic pod test for different ones that Athena offers an that when I lost my insurance!

I am going to get the glucose tolerance done next week. Will be paying out of pocket. Hopefully wont be too expensive.

You know every where I read it says that when doing skin biopsy for neuropathy two or three spots of skin are taken from different parts of leg but my doc only took one spot on my ankle.

I tried gluten free when I did the detox nutritional stuff for 21 days and didn't see any difference and gave up but I have realized that's not enough time.

Plus the natrual medicine doctor did body impedance test. Never heard of this before. He put electrodes like EKG and recorded results. To tell me if I continue this way my healing level is down!! What ever that means

Thanku

I get cramps also. Usually the feet or sometimes the calves. I also have the "strange" feeling in both legs along with tingling and numbness. The tingling can get intense enough that it hurts or sometimes burning.

Most doctors only look for elevated glucose readings. But in fact low readings precede the high ones. Low ones are hypoglycemic and are implicated in PN generation too.
Another more accurate way to evaluate your sugar metabolism is to do a fasting INSULIN level before you drink the glucose test solution. Elevated insulin levels indicate hypoglycemia, and insulin resistance.
Here are some graphs to illustrate the various results that can come up. Most doctors (unless endocrinologists looking for hypo readings), do not even consider low readings.
http://lightning.prohosting.com/~hyp...20Hypoglycemia

Your GTT should be at least 3 hrs long or more to show these dips accurately. A 2hr will not provide this information.

For myself I don't know the why. I have been so diagnosticly tested and seen so many specialties and many opinions. I may never know the why. I have tried to accept that and work on way to have a better quality of life through treatment. I do feel if I knew the why it would be easier to treat and manage of course

Mine is directly related to an autoimmune gluten intolerance. By the time we finally figured out gluten was the issue, unlike some, my neuropathy did not repair itself..I still am dealing with vitamin and mineral deficiencies after 10 yrs of gluten free.

Mine is sensory/small fiber neuropathy.

Supposedly autoimmune, Sjogren like Syndrome, with most systems affected, that said, I had restless leg as a kid....so, not convinced that something isn't hereditary as well. I got all the bad genes, except for my looks and brains (just kidding ;)).

My neuropathy came from vitamin deficiency after GBS.

It seems like if that is the cause (vitamin deficiency), most people are lacking in B12.. but my B12 wasn't low until months into the neuropathy. It was my vitamin D that was dangerously low... I haven't met anyone who developed neuropathy from low vitamin D levels.. it is always B12. So, I'm not quite sure.. but it was due to the surgery and the fact that my body stopped absorbing correctly.

Failed lumbar spine surgery and sever osteoporosis (only in the area of the surgery).

Best of luck to you and all of us.:hug:

I believe, after pounding the keyboard for a few weeks (I used to pound the books; now I pound the keyboard - things change.) that my peripheral neuropathy was caused by peripheral edema in both feet.

My PCP missed it. The first neurologist missed it. I found it on my own.

Interestingly, of all the searches I did on peripheral neuropathy causes, peripheral edema never came up. Then by sheer accident - I don't even recall why - I searched peripheral edema. One of the first links was Wiki, and there - low & behold - was the answer:

Severe swelling can cause permanent damage to nerves, resulting in peripheral neuropathy.

There's a lot more to the story, but I'm trying to be brief in answering the question. Coulda been worse.

Doc

Mines is Ideopathic which makes me feel idiotic!
I just want a diagnosis........

mine is idiopathic too.......I would like a dx too, it is frustrating.....the truth is there is a reason, just not obvious enough in the year 2010 for Dr's to find!

Everthing has a cause.........

Ideopathic here as well. Is there a breakdown by percentage anywhere of the causes of PN vs ideopathic? I would guess just from my observations here that ideopathic runs a close 2nd or even ties diabetes.

Yep.....you're right!
 

Yes, it is actually called, the Neuro get tired looking for a cause and kicks us to the curb!!!

Sorry, for the "vent", just getting weary with the pain, etc.......

No apology needed! I understand, and I'm sure everyone else here does too.

MrsD

You talked about toxic neuropathy. For me flu shot speed things up and I have taken coprocessor and levaquin but never finished. Only took two days worth and couldn't finish due to side effects.
But was having symptoms before the levaquin.

Any case when I started lyrica. I took 50 mg at bedtime and woke up with certain sensations that were there but now were worse. Like my eat lobes buzzing and pinching that migrate all over

So any ones guess.

What is coprocessor? I can't say about the Levaquin at 2 days.
Stephen Fried's wife had a seizure after one tablet of Floxin!
(he wrote the book "Bitter Pills" and this).

That was cipro! Sorry

Well it's impossible to pint finger towards one thing as iit has been going for so long. God knows all the stuff they gave me at child birth. Plus epidural and oh yeah the doc hit my nerve that made my leg jump ( but already had my symptoms before this)

Plus over the tears I had one MRI each year as the doc thought it was necessary and had 6 times emg and ncv test.
Contrast perhaps or may be stimulating the nerves everytime an emg/ncv was done.
May be those were all insult to an injury. I always here people complain about feeling strange things after MRI and emg/ ncv. So sometimes I wounder over goi to docs and keeping wanted to get more teat doneti check for changes made this worse and now what.
Random thought...
Tulips

So what is YOUR plan of action now?

Plan of action...
Hard to do with no insurance. Regardless going for ggt test friday. Waitin on skin biopsy result.

No more MRI or emg.
And getting on a gluten fre diet. Don't know what else.
I am scared to get on the medicines so I suffer in pain and take them until last resort.

I don't know what else to do...

Tulips I think you are on to something......
 

I don't mean to sound foolish or quick to jump to conclusions, but believe me this has not been a quick jump.......one and a half years of searching and going through every test imaginable. The next one is scheduled for end of this month........skin biopsy. Should have had that one first! But Neuro. wanted to rule out "biggies" first.

Anyway........Tulips, I think this Isaacs Syndrome is definitely a possibility, you are right it can include sensory sensations.

The way I understand it, only 40% of people with it tests positive on VgKc test.

You follow every symptom to a tee, and I follow about 80% of them, with sensory being more than muscle in my case, which it says is possible.

I would think skin biopsy would be negative if Isaacs was the case.

Ya its all confusing. I think my cramps and sesory are equal just fluctuate.
It does say only 40% so thats another problem.
I have had many test too but had to beg my doc for skin biopsy but I don't know why her only did one spot.

By the way 12 yrs if testing and no answers!'

I Understand......
 

Yes, that must be soooooo frustrating. I am frustrated after only 1 1/2 yrs.

It is hard enough to deal with physical issues, but to not know what the cause is, is awful!

The truth is, I don't think the doctors can diagnosis with certainty in some rare cases. As in Isaacs, there really is no test that is 100%, a diganosis would be a guess.....

My Dr. said "Most people with abnormal sensations all over body, never get a diagnosis!!" He says he only sees people about once a year like me! How special I feel!!

I keep saying to myself......."It is better to have no answer, than to have a tragic diagnosis."

I don't know I would like to know.. I think somehow it will change this uncertainty.

I keep thinking of things. I think mine could be autoimmune mixed with toxic from flu shot.
The thing is doctors drag Their feet in doing right test.
Most of line I had to demand and now having more research done I wish I hadn't lost my insurance I would have sone some special blood test with Athena. That check for hereditary And autoimmune neuropathy.

I have congenital spinal stenosis of the lumbar and cervical disk bulges pinching nerves causing the peripheral neuropathy in hands arms feet and legs.I have also had it flare up in my trigmenal nerve on my face. Man did that hurt.

Hi everyone this is my first post. I've been lurking here for some time. The reason for my peripheral neuropathy is from damage done from having 16 cardiac catherizations over 8 years. Started off slowly in the right foot/leg after about 9 caths. They had to move over to left leg because of scar tissue in the right groin. After approx. 4 or 5 caths done on the left side; I stated to notice numbing/pain in left foot/leg. It has since moved up to both knees. Does anyone else have this same situation?