I was formally Dx with Neuropathy in both my feet. During the conduction studies it was found that I have nerve damage.

But from what?? I have no underlying cause according to the all the blood work that was done. The doctor stated he sees alot of cases where there is no cause known. It just is.

I had carpal tunnel surgery in Oct and Nov for both hands. I'm wondering if there is a known connection between the two (CT and PN) and which direction that would take me in for research.

I was on Gabapentin and while it did work mostly, the sides were horrible. After about 6 months on 600 mg I simply stopped taking it. I felt better in 2 days. Been feeling better and better as the days have passed. I don't want any more meds like that. But it seems the options available aren't any better than Gabapentin.

I've had a return of symptoms over the past few days and they're worse than they ever were. To the point that I now have what feels like an aching sensation in various parts of my feet.

I'm also in the process of weaning off of Effexor XR. Down to 37.5mg for about a week now. I was only on 75mg for GAD. I've been on it for a little over two years. It did nothing for the neuropathy.

It seems that if I take 600mg of Ibuprofen that helps with most of the symptoms. At least enough that I can get to sleep. It mostly bothers me at night. When I wake up in the morning I have no symptoms at all. The Ibuprofen affect is a recent accidental discovery. So I'm going to continue it intentionally by taking 600mg's about 2 hours before bed. If I wait til the pain gets me back out of bed it takes longer for the Ibuprofen to work. I'm hoping that this will work.

I have an appt with my primary care NP on May 1st. I'll see what other options she knows of. If I had to have CT surgery I'm wondering if a similar type of surgery for my feet might be in order. The CT was not a repetitive motion injury but began during a pregnancy when I was about 23/24 due to being borderline toxemic. I wasn't bothered by it again for many years after that.

Does anyone else have PN without a cause that is or has experienced increasing symptoms? And for those that have this, what things have you done that've worked to relieve the symptoms?

Hello Jarrett622,

Sorry that you are in pain. I am new to this myself bit I am sure that others will come along who have much more experience of PN. One thing that I have learnt so far (and most of what I now know I have learnt from this Board) is that quite often no cause can be found for PN and it is classes at “idiopathic” PN. I am keen to find out the cause of my PN to the extent that the cause will/may determine the correct treatment. I do not know anything about CP or its connection with PN. As to treatments I am currently taking Lyrica and Tramadol that is helping to reduce the pain levels. When all this started it was thought that I had tarsal tunnel (which is like CP but in the foot) and I was prescribed Arthrotec that is a nonsteroidal anti-inflammatory drug similar to ibuprofen that did nothing for the pain. When my symptoms came on in the other foot my GP diagnosed PN and I was referred to a neurologist who prescribed the Lyrica. I am currently waiting for further tests at my local hospital. All I can offer is that you seek the advice of a good neurologist and work out with him/her a treatment plan. And make sure that you get good and effective pain management. I am sorry that you had such bad side effects with the Gabapentin, I am suffering side effects with Lyrica but I am staying with it because it gives me pain relief.

I am so sorry you are having pain,i was lucky and Gabapentin helps but i thought it was going to do me in until the dr. got me up to the levels i'm at..At the same time i had a horribal reaction to Lyrica ohhh i mean bad And then i hear it's so good for others.Have you been checked for diabetics..After telling my dr. could this be a promblem they checked oh dear we over looked that but the neuro dr. said well that wasn't my department. ha
As for your ct i was hoping that was my problem i thought no matter how painful ,they can operate and things will be better,when the dr. told me it wasn't and he thought it was pn i sat down and cried..I was a nurse for 25 yrs. in er i knew about pn and i didn't want it.But i do in feet legs,hands and up the arms..I also have found more answers at Neoutalk WHY because there are so many people walking around (if they still can)with tired acking burning tinlging feet and numb toes,and have no idea what it might be or what it is..Oh your just getting older,your on your feet all the time..And our older people falling,how come you fall so much.And on and on.
One day i asked my family Dr. what's wrong with my Neuro dr she. sticks pins in do you feel that what about that and finally i say yes and the look so happy..And when i pull out my hundred questions not a whole lot are answered why why why,my family Dr. said i wouldn't of picked that field because there are no answers that fit everybody and a lot of the times there are no cures they don't alwys know why..BUT we have each other we can compare,and we will let's never give up..Many blessings Sue

What to do? Few options.
That is usually what PN is all about. Pn can have causes and are categorized simply as: Tramautic, Toxic and Hereditary. Within those three categories there are over 200 different types. If you read all the 'stickies' at the top of this forum, you will see that diagnosing PN let alone WHICH TYPE is a challenge! Sometimes the HOW of PN, is clear and direct, as in trauma [car accidents or spinal deteriorations] or toxins [chemo, poisons or alcohol] BUT keep in mind that we are HUMANS and don't live in laboratory environments that make cases for clear cut causes and effects.
So the WHY part? First settle on learning about How things happened/are happening...that understanding helps with the coping of living with PN.
WHAT TO DO? Read, learn, choose what may or may not be effective in helping you not only live with it all, but to ultimately heal.
Back to the WHY thing, how is this different from the WHYs of folks getting Cancers, MS, PD or other illnesses? The thing is IT'S HERE, let's deal with it. In a way I'm grateful that I've the PN/CIDP and not something worse....that knowledge helps me get thru each day with a better attitude than living in misery [and PN IS miserable] Thing is, it's very RARE to actually have a clear-cut WHY for anyone.
Learn from the folks here, read as many prior posts as you can asorb and I'll bet you will find that a lot of your questions have been asked and answered [as best as we all can] before. There's always new stuff going on tho, never know who will find some solution to one of our problems!
For the meantime, I wish each of you at least ONE pain-free moment today! - j

--you're a member of a very large club. Approximately one-quarter to one-third of all documentable peripheral neuropathies (depending on which medical review you're reading) are idiopathic, meaning that they currently hve no known cause. For sensory neuropathies that affect primarily the small, unmyelinated fibers that subsume pain and temperature sensations, the fraction is probably even higher.

For many such neuropathies, autoimmune and/or impaired glucose tolerance/metabolic syndromes (short of diabetes) are often suspected, but it's difficult to tease these out if one is receiving "normal" test results. It's why investigations into causes of neuropathic symptoms--inclduing those due to problems of the central nervous system, for which the symptoms can exactly mimic those caused by problems with the peripheral--are often so long (and expensive).

What nobody needs are doctors who are unfamiliar with the range of testing that needs to be involved to try to find a cause. There are many docs out there (even neurologists) who have a frighteningly limited idea of what causes neuropathy and what tests can be brought to bear. It's why many of us use the spreadsheets at www.lizajane.org; they are not only comprehensive as to neuro symptom testing, but are great for tracking one's own test results over time, to see patterns.

Also, from our Useful websites, these documents might be helpful:


http://www.neuro.wustl.edu/neuromuscular/naltbrain.html

This is the diagnostics entry point for the huge neuromuscular conditions database at Washington University of St. Louis' medical website. It is written primarily in outline form, and mostly for medical professionals, but it is extraordinarily comprehensive; going through the links and sub links reveals a wealth of info on neuropathy (and other neuromuscular conditions).

http://www.aafp.org/afp/980215ap/poncelet.html

The famous Poncelet protocols. Outside of neurology textbooks, this article has become the "gold-standard" guideline for many physicians and neuros for investigating the causes of potential neuropathies. The flow charts are particularly instructive (and good to show ingorant physicians).

http://www.thecni.org/reviews/13-2-p07-treihaft.htm

One of the best articles I know written about small-fiber neuropathies, which can be difficult to diagnose, as "standard" tests for neuropathy often come up "normal" and fail to reveal them (and meanwhile patients suffer). The reference list is excellent--it includes many of the seminal papers on skin biopsy, autonomic testing, and small-fiber vasculitis and other causes of small-fiber dysfunction (these can themselves be investigated if one wants).

http://www.questdiagnostics.com/hcp/...a lNeurop.htm

A small but dense clinical application paper about laboratory tests to investigate causes of peripheral neuropathy. Dr. Latov heads the Cornell Weill Center for Peripheral Neuropathy in New York City, and he and his staff may be the world's leading experts on immune-mediated neuropathies (not that they're slouches in other realms, either). (All docs there are both researchers and clinicians--and, I can tell you from personal experience, an informed patient can have great discussions with them.)

http://www.dcmsonline.org/jax-medici...uropathies.htm

Another good paper--this one form Dr. Alan Berger and his colleagues at Jacksonville Shands. It provides a good overview of diagnosis and treatment options for various kinds of neuropathies, and suggests a particular categorizing method to understand them.


Still, even with all this, a good fraction of neuropathies remain stubbornly idiopathic--the nerve damage can be documented, but the cause remains stubbornly elusive.

Carpal Tunnel is merely one type of neuropathy, caused by compressive forces on the nerves that pass through the rather narrow/crowded wrist area. People with impaired glucose tolerance/diabetes and various vasculitic autoimmune disorders have higher rates of carpal tunnel (and other neuropathies) than others, so it's really worth a very detailed workup for these as described in the spreadsheets (three-plus hour glucose tolerance testing aand a really thorough antibody check). Ischemic damage tends to make it more likely that compressive forces will cause symptoms that "normals" would not experience--sort of like a double whammy on the nerves (neither alone might cause much symptomology, but together . . .)

Can you give us a run-down on exactly what testing you've had so far?

Taking a deep breath here. Yep, idiopathic is what mine is labeled. However, the only tests and studies that have been done are blood work (ruling out diabetes, auto-immune like Lupus and a few others I can't remember at this point) and a conduction study. Nothing other than that. Then I was put on Gabapentin.

I kind of figured there had to be much more to look at and rule out. Blood sugar showed as normal but as you said, glucose tolerance is not known.

I'm reading through the links you posted. Thanks for that. One link is to a missing page...and I *really* wanted to read this one.
http://www.questdiagnostics.com/hcp/...a%20lNeurop.htm
I'll go back and search there to see if it's perhaps just been moved.

This is a lot of information to go through but it's important. I'm a firm believer that we all have to be our own best health-advocates. As you suggested, there are many doctors of all kinds in all specialties that don't know alot about specific health problems. This is where we come in. We have to educate ourselves about what ails us. On the other end, some docs are willing to listen and learn and others are too arrogant to do so. Thankfully my NP is one of the former.

I was wondering about the CT connection because I came across an article that said something to the effect that in some cases what has happened with the wrists is repeated in the ankles/feet. Since my CT seems to have been idiopathic as well I was wondering about a connection. From what I went through with the CT I'm aware that if there's been permanent nerve damage surgery may be of limited value as far as relief from symptoms.

My other half brought up a good question and I haven't mentioned it because it scared the crap out of me...he's wondering if I had some kind of silent stroke at some point.

The neurologist I was referred to I was referred to for the CT symptoms and testing thereof. He did a sensitivity test using a pin. I felt the pin but not the sharpness but once he got to right above my shins I could feel the actual poke of the pin sharply. He also did basic nerve conduction tests as the equipment was already set up. He comes in from a different town several days a month. Yep, I live in the boonies, medically speaking. I also have no insurance. I do have medicaid for a short time. If this is something that has to be investigated and treated long term what options do I have with no insurance?

I'm a bit overwhelmed at the moment but will post if more comes to the forefront of my fried little brain.

Oh! The Ibuprofen (600mgs) worked last night. Yesterday, I also restarted sub-lingual B-complex containing B-2 (100%), 6 (100%), 12 (20,000%), Niacin (100%), and Pantothenic Acid (300%). I realize that the daily values these percentages are based on are probably on the low side. There also is no folic acid in it. I did notice after taking it yesterday that I wasn't as fatigued as I normally feel. I'll be discussing this with my NP also.

Barbara

Grrrr @ the Gabapentin. It's not much of a choice IMO, between taking the Gabapentin and be *very* depressed with suicidal thoughts or suffering from the pain. Neither is an option I would willingly choose. But since I value my life more than my feet, I guess no Gabapentin is the way I'll go.

I'll know more when I talk with my NP, I *hope*.

Barbara

Great! Just what I wanted to hear! Seriously though, I have pretty much come to the conclusion you suggested: There may be no cure just simply treating what can be treated, treating the symptoms and learning to live with it.

And I also wish all of us pain-free moments. They're very precious.

Barbara

I was on Tramadol, post-surgery for my left hand. That combined with the Gabapentin, Effexor XR and Ibuprofen made me a terrible mess and increased the suicidal thoughts to the point I almost had myself admitted. It really scared me.

The 600mg's of Ibuprofen back the pain off to where it's just a slight tingly buzz but not enough to keep me from falling asleep. I don't do well with sleep deprivation of any kind. My schedule is screwy enough without that. I'm not a day type person. More of a nightowl. I sleep better during the day than I ever do at night. I get through very few days without a nap but if I'm in a up-all-night schedule I never get sleepy. Unfortunately, I have to be up during the day now that I'm no longer working the 12 hour night shifts I was working as most of the rest of the "normal" world are day people.

Barbara

in relation to what Glenn posted about the percentage of idiopathic cause of PN, i wonder how much higher it really is when the misdiagnosis of a cause is taken into account. For example alcoholism as a cause seems to be way over diagnosed. Not to mention those attributed to stress and anxiety.