Severe Neuropathy
 

I would like to know if there is anyone out there with neuropathy as severe or more severe than mine? And if you know what it is caused from?

I was diagnoised only three years ago with neuropathy but my doctors have not been able to determine the cause. My neuropathy is so severe I am in constant pain. I am numb from my calfs down. My knees and upper legs burn. My hands are in severe pain top and bottom with parts of my fingers starting to go numb. Sometimes my arms and face burn too. And this is with medications. My doctor says we cannot kill the pain completely. Only try to make it tolorable with the least amount of side affects.

My doctors have not been able to determine what is causing my neuropathy and I am getting scared as to how far this is going to go. How long am I going to be able to push myself to go to work everyday? Some days I cry my way through the day. If anyone who has neuropathy this bad, are they on disability? I am not a quiter and I am afraid of letting my spouse down if I say I can't work anymore.

I really would like to know if others are this bad and how they are handling it.

Hello, Julie. I went back and read your posts.

Did you ever get the B6 to work? Did you have blood work showing low B6?

What is happening now with you, medication wise, and supplement wise?

Longstanding PN may be due to
1) hereditary factors. CMT and its variants. Were you tested for this?

2) poisons from well water...arsenic or pesticides. (California is just in the new this week with this problem affecting schools).

3) gluten intolerance. Have you tried going gluten free? We have a forum for this.

4) reactions to some drugs like statins, fluoroquinolones, Flagyl, etc.

5) thyroid malfunctions (this is what I had).

6) autoimmune disease... were you tested for this?

7) have you been tested for B12 levels? are you below 500?
Also have you had a Vit D level run? Most Americans are quite low in Vit D and new research is coming out about this now.

Hi Julie,

I do know the panic of wondering if the PN is going to continue to get worse, and if so what is causing it, so one may get some help.

I am having some painful knee problems at this time and not for sure if it is PN. I have a bone doctor appointment Monday to see if it is PN or something else. Sometimes we think that everything is related to PN, the thing is, sometimes it is and sometimes it is not. It is very frustrating trying to find out what is what.

The doctor said I have mild sensorimotor polyneuropathy, but I am in pain every day even with medicine. Once in a while the medicine gives me some relief, just enough to get the edge off.

I wish there was a easy way to find out what it is, but if we continue maybe somehow we or the doctors can figure it out.

Sorry for the pain and suffering you are going through right now and the anxieties of it all. Hopefully you will be able to start ruling things out, knowing what it is not, and maybe come to a better conclusion of what is causing the problems.

Trish :hug:

I am going to have to look into my test results to see what I have and have not had done. I was wondering;


we lived on an Airforce base for 16 years with well water. I always have wondered about the water there because I remember there being something about the city near by worrying about chemicals leaking into their water system. But if there was something wrong with the water wouldn't my kids and spouse be having problems too?

not nec so, your spouse and you dont share the same genetics, and your children only half.

maybe, maybe not. It depends on the genetics and how people clear toxins or not. If you Google military base EPA or military base contamination...you can find alot. I did that type of search a long time ago during the Cynthia Sommer trial, where she was accused of poisoning her hubby with arsenic. Her hubby was a marine who inspected bases for toxins, and became ill right after returning from one, and he suddenly died in the night from cardiac arrest and his wife arrested years later after NCIS wanted to blame someone. The samples NCIS provided to a poor lab showed high arsenic levels. But the slides of her husband's tissues showed NONE. (I always suspected a frame up for her, since they went after her over 2 yrs after the death). She has been since exonerated, and is now suing NCIS and many others for false imprisonment.

examples:
http://www.unbossed.com/index.php?itemid=1628
http://www.govexec.com/dailyfed/0307/030707cdam2.htm
http://docs.google.com/gview?a=v&q=c...vkv1ILDrGVXw0A

This is one article about the California contamination:
http://content.usatoday.net/dist/cus...31671537.story

hi Julie

I used to have neuropathy with very severe unremitting pain (I remember walking around the house crying) but these day my problems are progressive motor loss and numbness. My neuropathy seems to be progressive, and has just spread to one hip making it difficult for me to lift the leg up on those sides.

Neuropathy takes so many forms, that it's pretty impossible (and probably rather pointless) to compare severity, but I must say although many would call my current neuropathy severe I prefer it to the severe unremitting pain I experienced in the early days. I have no idea why my neuropathy changed in the way it has, I am just grateful that it did.
I hope you find a way to improve your situation soon

regards

raglet

peripheral neuropathy
 

I have a lot of pain with My PN.

I lose all feeling in my legs and feet when i walk or stand for very long. I lose muscle control also. Its pretty awful. Lately i have been experiancing nerve pain at night running down the length of my arms into the palms of my hands. Now that was painful.

i have applyed for disability and have been turned down once but i am not a quiter and i am going to fight for the benifits i have. I have always worked fulltime up until this last couple years. now i dont work at all.

Sure hope you find some relief, get a good dr. who you can feel good with and that could help you a lot. It has me.

Pain in all forms seems to come with the territory?
 

Having had the 'joy' of having to go to the ER twice this summer? Trying to explain the CIDP possible muscle loss and pain .... I equate to those with severe burn victims. THAT is something docs can relate to-other than neuros. In my own case? It was IF the lower half of my body...while there? WAS DISSOLVED when trying to use it.
Those same docs would ask me about my 'pain levels'...I would bluntly state that I do NOT UNDER ANY CIRCUMSTANCES do those stupid 'happy-not happy faces'! Saying It's about a 6-8 on a good day? And now that bone from a fracture is almost sticking out of the skin? Well, it is no different. Thing is..thruout YOU HAVE TO BE CONSISTENT.
I've found that pain pills can help at times...but not the actual elimination of pain. They merely dull your mind so you don't care! In that same hospital, last time? I KNEW I must be in deep trouble when they debated about how much morpheine to give me. I didn't care on that stuff, but the other side effects kicked in and that created new problems [constipation of the major sorts]
Pain pills only cut the top of the sort of pains we experience. Sometimes 'getting by' is the best we can do? My view? As long as you can FEEL, there is hope! I still feel pain, tho I should not. I at times feel less pain than at other times.
While toxic neuropathy may be your issue? I would take a peek at this web site ...that Glenntaj or another good person found-it's a treasure.
http://neuromuscular.wustl.edu/naltbrain.html
Read and learn, learn the questions to ask.... Don't look for the cause, as it's not going to be simple, unless there is one heck of a distinct cause/effect aspect apparent. Look at the tests you might need to get diagnosed and then treated properly. I'd had a neuro say essentially: "it was all in my head' In my case, it was not - it was an autoimmune neuropathy and treatments are expensive but essential to daily functioning and pain relief. I am luckier than others tho, who for some reason do not benefit from some treaments.
Lastly? Being afraid, scared stupid and lots of other WHAT-IF's do crowd the mind? Do not let fear win! Learn, be smarter than your doc at times so's you ask those key questions or, tell those key bits of personal 'history' that get you diagnosed. What we have does require a good nutritional and vitamin regimen as Mrs D suggests. It HELPS. But all of this takes time, persistence, good eating and good treatments. Think of it as being struck by lightening? Only what's happened/happening is chemical. And, also? Body malfunctioning programming.
Testing is the process of 'elimination'. Keep at it and no one, please don't cry until the jury is back? Save your energies for finding out what all is going on...then figure out how best you can deal with it all. :hug::hug:'s - j

Hello Julie k,
A lot of folks have helped me on this forum, just curious what AF base were you at, I grew up a AF brat.
Lanny

My husband was stationed at Hill AFBm Utah. I googled Hill and founf that they are dealing with Tridoroethene in the ground water near the side of the base we lived on. I don't know what that is, but I guess it has been there since the 1940's.

Dear Julie,

Sorry to hear about your pain. I, too, suffer with neuropathy, but not as severely as yours. A few things you should definitely have done, if you haven't already:

1. An 2-hour oral glucose tolerance test, along with HgA1C, to see if you are diabetic or have impaired glucose toleranace. Both conditions are highly associated with neuropathy and, if treated, can help stop it from worsening and may even lead to slow recovery.
2. EMG to test your large nerve fibers. If your EMG is normal, then you should have a skin biopsy, measuring the epidermal nerve fiber density at the foot or calf and the thigh. This test is relatively new and there's only one lab that offers it, called Therapath in New York. It will show if you have small fiber damage.
3. Be sure your doc knows your alcohol history; next to diabetes, alcohol is the most common cause of neuropathy. Good news is that patients who stop ETOH can often look forward to recovery from neuropathy.

Hope this helps

Just one addition--
 

--while the skin biopsy to test for intraepidural nerve fiber density is not a common test, and many places have no idea what it is, it's certainly offered through more places than Therapath.

I had mine done at the Cornell-Weill Center for Peripheral Neuropathy. It's also done at Massachusetts General, The Jack Miller Center in Chicago, Johns Hopkins in Baltimore, where it was first researched and developed, and a few other tertiary centers. And Hopkins will send a kit to physicians now so that skin samples can be taken and sent back to their lab for analysis.

The samples need a certain type of staining and electron microscopy for analysis, and that's why this procedure, which is the current gold standard for diagnosing small-fiber damage, is not more widely available.

cause of your neuropathy
 

Julie,

You say the docs aren't sure why you have the neuropathy. Have they check out diabetes or impaired glucose intolerance with 2-hour oral glucose tolerance test and HgA1C blood work? The following should also be part of the regular neuro workup:

- Heavy metals test (lead, mercury, arsenic).
- B vitamins
- History of alcohol consumption
- EMG and skin biopsy for large- and small-fiber nerve damage.

Good luck....

Me to I feel your pain
 

Hello yes I have SEVERE NEUROPATHY in both of my feet to the point I cannot sleep and walk much I am 37 years old I found out it is from diabetes it sounds like that is what you may have yourself

Hi there
I only skimmed through the other responses, and I am not here to ask you questions, but just to let you know that somewhere out there (over here :-) is a 29 year old woman with severe neuropathy ( at the moment idiopathic)
I burn from my neck to my feet. Thighs, stomach, arms and legs at the moment. And that is on lyrica, supplements, oxycodone, and hydromorphone. I can only imagine what it would feel like withOUT the medication
If you ever want to vent, please don't hesitate to PM me.
I pray for your strength.

Featherbullet, I too have severe peripheral. I'm replying to the meds that you are taking and what I've learned this week. I too take lyrica, 200 mg. 3x plus an extra at bedtime. Gabapentin 600mg. 3x. Essentially, "maxxed out" on both of them. I also take vicodin, about 1-1/2 hour before bedtime.

Recently, I tried something different with my doctor. We weaned off both the lyrica and gabapentin while starting on the Fentanyl Patch. (synthentic morphine.) Once weaned off of those two, the pain was terrible while on 25 mcg/hour patch. I had to start taking some low dosages of lyrica and gabapentin. Then my doctor took me off of the Fentanyl Patch, and started me on MS Contin. (morphine sulfate - 30 mg.) up to 3x. Still pain was so severe that I stopped it and went back on my regular dose of lyrica and gabapentin.
I go to a monthly "Pain Support Group". Our speaker was a Pharmacist who has specialize in Pain Medicine.
Long story short, Morphine, Fentanyl, Oxycontin, all "opioids" do NOT work for nerve pain.
As a matter of fact, they make it worse.
(When I came off the trial of fentanly and morphine, which was almost 7 weeks, I couldn't understand why my pain was worse, even though I was back up to my normal dosage.)
He told me that although the vicodin is in that same catagory, and it works for me, I should keep using it for breakthough pain and at bedtime.

You said, "And that is on lyrica, supplements, oxycodone, and hydromorphone. I can only imagine what it would feel like withOUT the medication ".... You may want to stop the hydormorhone and oxycondone. They may be making your pain worse over time. Maybe substitute with vicodin.

Mike B