[jarrett622]

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?

[Lupin]

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.

[jarrett622]

Originally Posted by Lupin

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.

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

[jarrett622]

Originally Posted by Lupin

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 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

[HeyJoe]

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.

[jarrett622]

It really makes one wonder doesn't it? I was doing some reading about B12 levels. That's an often under-diagnosed and often outright misdiagnosed cause of PN.

I'll be bringing this up with my NP at my appt May 1st.

Barbara

[glenntaj]

--and this should get your there:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

You certainly won't get any arguments from people on this board about needing to be one's own best health advocate. Too many of us started out trusting doctors who were uninformed or underinformed about the possible causes of our symptoms, and wound up having to do the research ourselves, and drive our own testing protocols. It makes many of us rather cantankerous.

In truth, most of us here, from doing the research and sharing notes, are far more informed about neuropathic conditions than most physicians, even most specialists. It makes for interesting doctor-patient relationships. Some physicians are rather scared by the loss of control that such Internet-informed patients can cause them--I don't see such physicians any more. I will not see a physician now who is not affiliated with a major teaching/hospital and/or is involved in research in his/her field of specialty him/herself. As I've posted before, most other physicians simply do not have the time or inclination to keep up on the latest knowledge, whereas we do--we are personally affected.

It does sound like your work-up has been very limited. It may well behoove you to be referred to a specialty center (though I realize that is very difficult if one does not live near a major city or university--and/or if one has lousy health insurance--that's a topic for another rant some other time).

[LizaJane]

If you truly do have "idiopathic" pn, you have lots of company here. But remember, idiopathic only means the cause is unknown at this time, not that there is not cause.

But before talking about "idiopathic" pn, it's important that you have loads and loads of vials of blood drawn to get all the applicable tests I've posted on www.lizajane.org. To know which tests are really important, you have to know a bit about the type of neuropathy you have.

I'm going to guess you have sensory neuropathy. So, look at all the tests labeled sensory neuropathy. There are a lot of antibody tests, and some genetic tests, which should be done, for thoroughness.

I don't know how old you are, but idiopathic usualyl starts in the late 60s. There are many of us younger than that here, and it's my guess that we have something a tad different, cause unknown. Maybe we had a toxic exposure way back, or had autoimmune reaction to nerve during an virus, or something else that attacked the nerves. Maybe the cause of the problem is gone, so the nerves can heal.

I think a lot of us idiopathic folk have greatly improved wtih good diet, supplements and exercise.

Pain medications can be problemmatic unless really needed. They can sedate you and make you sedentary, which is the greatest risk of all. It's important to stay active and keep sending signals to the nerves to work. Peripheral nerves do regrow, so they need stimulation. I have no opposition to pain treatment when the pain interferes with activiites, but if the pain just interferes wtih comfort and not functioning, you might be better off without it.

Alternatively, a good night's sleep is a key to healing. If you have pain at night, you might find that a medication like Klonopin, which calms the nerves, or Lyrica, would help you fall asleep. In fact, the lighter sleeping pills can help also. Anything that gets to a good night's sleep is great.

I myself am taking Klonopin at night. My doc suggested I try Lyrica, so right now I'm on a lower amount of Klonopin and a bit of lyrica. It makes me much more comfortable.

Please stick with the research and learning part. Take charge of your own care. Youll get a lot of help with that here.

Good luck.

[jarrett622]

Sensory neuropathy? I'm not sure what you mean.

As far as idiopathic, he didn't seem to do a whole lot of testing as I'm finding out. Not sure why he didn't bother to follow this up a bit more closely. I find that disturbing but not really surprising.

If Lyrica is anything like Gabapentin was I'm not sure I could stand to take it. I'll know more about my options as far as meds, hopefully, at my appointment.

In the meantime the research goes on.

Barbara

[shiney sue]

[SIZE="3"]This started with[ but my neuro flat out asked me if i drank i being so wise said ok ok once in awhile a cup of coffee Honest!! Yes alcoholism does play a part,don't believe me tell the drs. at the Mayo,also i would think aniety and stress would play a part.
I couln't feel that pin at all until they hit my thigh then OUCH but was glad to feel it...Oh well Sue /SIZE]