Discussion Topic

Inguinal (groin) Neuropathy Issues

Posted on 06/01/08, 02:57 pm

I would like to find people who have experienced some type of injury and/or condition in the inguinal (groin) region.

Anybody with comments...please join in!!!

To get this thing started...I should let you all know that I am a chronic pain sufferer from Post-Traummatic Inguinal Neuropathy. I could write 100 pages about my experience, however, I would like to interact with you all...we can share experiences, help with treatment options, and so on...

Thank you all!!

-Dave

Showing 1 - 10 of 61 Replies

Reply #1 06/01/08 10:41pm

manny123

Dave, hi I looked up on your profile to see what inguinal neuropathy is and i didnt see anything, can you tell me what it is, and how do you get it
Reply #2 06/02/08 12:34am

thxcarelessdoc

Manny, Post Traumatic Neuropathy is nerve pain that results from an injury or the consequence of a medical intervention. The inguinal region is is what most people refer to as 'the groin'; major nerves in this area include the iliohypogastic, ilioguinal nerves, and genitofemoral (which branches at the groin to serve the genitals, with the femoral continuing into the thigh). Auto accidents and hernia repair surgeries would be two common ways to 'get' this most wretched of conditions.

Thank you for starting this discussion, Dave. I hope sharing information and support will be helpful to all of us. Chronic pain is very isolating and the nature of the area it affects makes it doubly so.

In my case, the ilioguinal and genito-femoral nerves were damaged by laparoscopic surgery ten months ago. The surgeon insisted nothing could be wrong and Vicryl sutures that wouldn't dissolve and created subsequent infection added further complications and delay of treatment.

Still struggling to find some kind of even mildly effective relief and manage what this has done, and continues to do, to my quality of life.
Reply #3 06/02/08 8:52am

Paxton

Dave,
Although your situation is far worse than mine, we do have some commonalities and points of contact. Marfan's Syndrome has caused several of my spinal structures to deteriorate, pinching and irritating associated peripheral nerves, including those that manage the inguinal/urogenital region. This caused terrible bladder pain, which was cured by an RTX infusion and a urinary sphincterotomy, both in 1999. These procedures saved my kidneys from reflux damage and largely restored my quality of life by ending the pain, but caused total urinary incontinence and occasional bowel incontinence. RTX is a nerve poison; destroying those bladder nerves was truly a blessing. The sphincterotomy was intended to protect my kidneys; I was afraid that it might lead to increased bladder infection frequency, which, thankfully, has not happened.
Reply #4 06/02/08 12:39pm

djbds1

Hello again everyone...I cannot thank you all enough for your EXTREMELY quick responses. I just discovered this site yesterday while looking into the idea of online support groups. Amazing how after 4 years of dealing with chronic pain...NOBODY led me in the right direction as to who I should talk to for help or where to go for support. Nobody ever said you HAVE to see a shrink for help...it seems perfectly clear that the help is right here.

OK...now that is out of the way ;)

Manny123...thank you for your response and hug! With regards to my condition, thxcarelessdoc gave a great comment/explanation. Neuropathy is the "generalized" term we are all using to describe what ails us in our individual ways with regards to certain nerve-related pain; i.e. tingling sensations, pinching, shooting, BURNING, radiating, stabbing, intermittent, electric, slicing, grabbing, wretching, etc...

My condition, post-traummatic/post-surgical inguinal neuropathy is the aforementioned list of pain signals (as described in their various ways) with location in the inguinal region...or the groin. My condition actually affects the (areas) inguinal, lower abdominal, front/inner thighs, hips, a bit of the lower back on the right, and unfortunately...my genitals (primarily the testicular sac...just the skin...on occasion in the testicles...and the base and tip of the penis...the mid section of the penis is strangely unaffected unless erect). As thxcarelessdoc mentioned, this condition can result from a surgery like hernia repair. I had a right herniorrhpy in Jan '05 and a left herniorphhy in April '05. Following EACH repair, I began to experience the neuropathy pain symptoms in the regions where the surgeries were performed. Now, my pain was on a constant of about a 4-5 out of 10 for the rest of 2005...when my surgeon (same surgeon from the first two) recommended a complicated and risky surgical option...neurectomy...surgical resection/removal of the nerves which cause the neuropathy in the inguinal area. In Feb '06, after I got a second opinion and did the little research I could on the subject; I agreed to the procedure for my right side (worst pain)...the doc removed the ilio-inguinal and genitofemoral nerves, however; she was unable to remove the ilio-hypogastric nerve because she SAID it was too entrapped in the scar tissue from the right hernia repair. What ACTUALLY happened (just found out at the start of 2008...got the surgical report)...she did remove the two nerves stated above, however; she was UNABLE to even LOCATE the hypogastric nerve...HOW DO YOU NOT LOCATE A NERVE YOU ARE CUTTING SOMEONE OPEN TO REMOVE??? After the neurectomy, my pain skyrocketed up 800-900%...and the many complications that followed were horrible.

I like to describe my pain as...having a red-hot screwdriver (regular or phillips...your choice!!) being pushed into my groin for a few seconds, then slowly twisted around inside in random directions until it cools...at which point the inevitable follow up pain is soreness. Now, I have obviously never experienced that EXACT type of situation, thank god, but I can relate my pain experiences rather easily as they feel so very SPECIFIC!

To thxcarelessdoc...thank you for sharing your condition...I cannot tell you how much it means to me to read about someone ELSE that is dealing with this problem. I cannot help but cry when I read the little amount you shared...I am sure you have so much more to share. It seems like a curse in the medical industry when talking about inguinal neuropathy; either the doctors/surgeons will not deal with it, they will not talk about it like it is serious, they will deny the actual possiblity it can exist, or as you have experienced first hand...they will DENY they could have ever caused such a horible affliction. If my doctor would have just admitted to me what went wrong...of better yet...if she would have given me any one of the countless options I had available as a precursor to the neurectomy...I would have felt MUCH better. You know...the neurectomy procedure I had done is meant as a LAST RESORT OPTION in inguinal neuropathy treatment!! My surgeon told me I had dried up all of my treatment options and the neurectomy was the only remaining one. Of course, my research did not turn up any treatment options available because I was NOT LOOKING IN THE RIGHT PLACE...inguinal neuropathy is a VERY specialized condition that is treated by chronic pain specialists and neurosurgeons...the info available for treatment options is VERY hard to find. Long-story short, since the neurectomy...I have undergone 10+ treatment options that should have come BEFORE the neurectomy was ever offered.

Paxton...please...do not ever think that someone else's condition is worse than yours!! I can understand that there is ALWAYS someone out there that has it worse off than yourself, however, each of us have to deal with situations that are SO SPECIFIC to us as individuals that nobody else would ever begin to know the pain.

It sounds to me like YOU have it WORSE off!! I could not imagine going through the problems you experience. I have nerve-damage that causes EXTREME shots of pain to my bowels...and when my bladder fills up during my sleep from my nightly glass of water, I wake up with one of two results; 1)I cannot FEEL anything in my groin or genitals and my blader will be distended from being TOO full (I will never wake up to use the restroom because the nerves are numb and I dont even know I need to go!!) AND 2)I will wake up with HORRIBLE pain shots to my bladder. I also experience ridiculously bad shots of pain in my bowels while digesting. I know this sounds a bit disgusting, however; I will actually feel the bowell movement MOVING through my lower digestive track and once it passes through the area directly behind my groin, I start feeling REALLY strong aching pain that gets worse and worse by the second. EVEN if the pain only lasts for 10 seconds, it is bad enough to ruin my entire day!!

Paxton...would you be able to tell me a bit more about RTX?

Once again...thank you all for your replies. Sorry for the novel of information...I have a bad habit of writing too much!!
Reply #5 06/02/08 6:40pm

Paxton

djbds1,

Yes, your pain is worse than mine, because I'm no longer in pain. However, in the years 1985-1999, my bladder would spasm uncontrollably and with pain that morphine scarcely dulled. The contractions left me curled in a fetal position on my bed, praying for my next dose of painkiller. At first they came only once or twice a year, but grew in frequency and intensity, so that by 1997, they were coming several times each hour. In 1999 my urologist measured my bladder capacity at 1.25 ozs., which was enough to cause a violent contraction, which by then was happening six to ten times per hour, 24/7. RTX is a nerve poison; infusing it into my bladder increased its carrying capacity to eleven ozs., and ended those years of disabling bladder pain. The sphincterotomy made me permanently, totally, incontinent, so I must wear diapers 24/7 for the rest of my life. However, it did end the reflux threat to my kidneys, so I'm not complaining.

With you, I too can feel the bolus of digested food coursing through my GI system, and, occasionally, when it goes numb, I sometimes soil myself. When the characteristic ache that you describe so well hits, I have maybe thirty seconds to find a toilet. If not, I must hope my diaper will do its duty.

I agree, discussions such as this are disgusting. However, the squeamishness of our families and friends aside, we must live with these conditions day in and day out, and reaching out to offer and accept support from others in similar straits saves our relationships with family and friends, who would be repelled by our needs. This alone makes this site invaluable.
Reply #6 06/03/08 4:16pm

thxcarelessdoc

As long as the discussion doesn't take place in an inappropriate setting (dinner table,etc.) I can't see anything disgusting in honestly sharing critical information others will need to know to make a fully informed decision about the benefits, risks, and impact on daily life of the procedures they may be having to consider. Too often doctors won't think to tell you and if you don't know if enough to know what to ask, or are to embarassed to do so, you won't find out until it's too late.

When I don't share with friends and family, it's more because I'm concerned about worrying them than disgust. Still, there is humiliation--

When sharp, crippling pain shoots into your elbow, it's natural to clutch it and others will understand and may even offer assistance if the intensity forces you to stumble and gasp. But when it's shooting into your labia...even a pop star can't get away with panting and gripping their crotch at the grocery store!

DJ...I was thunderstruck by how much our situations with idiot surgeons are similar. The ob-gyn who gifted me with this delightful "poor outcome" is a great example of physicians who have more ego than skill...and I stuck with him because I assumed it must be my fault, after all, he came highly recommended. He treated me like a silly hypocondriac every single time I expressed a concern although I never bothered him with questions about anything that didn't turn out to be serious and justified. There is no excuse for continued failure to disclose conditions requiring lifelong monitoring and treatment, surgical complications that change the outcome the patient was told to expect. When they ask you directly about unexpected symptoms that impact their lives, don't side-step and try to put the blame back on them. Answer honestly. People understand even with the best skill and intentions things don't always work out. All they want to know is, what is it and how do we fix it? They shouldn't have to get their records and pore over them with a medical dictionary.

I won't bore you with the events that led up to this last, disasterous surgery, only that I felt this would be a good one because it was the only one not done on an emergency basis (and those would not have been rushed if my concerns hadn't been brushed off earlier). I took time to try alternative therapies and when surgery was the only thing left, research my questions. When I went in to consult, list of questions in hand, he actually chuckled and took them and folded them away. He explained as if speaking to a slow child that it was very simple, just three tiny cuts like before and I'd be back doing my active job in two weeks, pain-free and good as before. That made me feel stupid and at fault that healing wasn't nearly that easy or fast before. (I've since learned the months of ripping pain were from extensive lasering on my ovaries, uterus and bladder. The 3rd degree burns adhere and tear with movement.)

I was optimistic but when I awoke it was obvious this had been a more serious event than before. Aside from larger, sutured incisions and a belly that was solid purple, the pain was significantly greater and not only in areas I'd expected but from my low back to my pubic bone and shooting into my upper thigh. I found that it was difficult to avoid dragging my right foot when I walked. Worse, the wounds were immediately infected and wouldn't heal. Although I called in with my concerns and finally convinced them to give me an antibiotic, no appointment was available until my standard 2 week followip that would release me back to work. So it was then that I found things hand't exactly gone as planned and I'd be needing another 6 weeks from work.

"Hey, we did major surgery in there!" he crowed. "Don't let the little cuts fool you, we almost had to go ask your husband for a laparotomy!" My questions about the groin pain were dismissed with a firm, "everything went fine". Since I had to come back to have the infections checked I made a point of asking again, and inbetween with calls to the nurse: every time I was brushed off with a scolding that everything was fine and I needed to be patient and allow time to heal. Then I got a letter saying I was no longer a patient. I was shocked and felt it a punishment for asking questions. I resolved to give it more time to heal.

I tried to ignore it and give it more time. Clients were anxious to start booking again after my absence, but a few per week was more than I could manage and was forced to refer more and more to other therapists. Finally a long-time client who used the same ob-gyn insisted I see her neurologist, and that was the starting point for getting a handle on what had happened to me.

Until then I thought the pain probably due to adhesions, scar tissue, stray undissolved Vicryl or the like. Because NOWHERE in any of the hours and hours of sleepless nights that I spent poring over literature explaining possible outcomes of laparoscopic surgery was PTPN mentioned. But once you know the "magic words", the sheer volume of information and case studies cited in medical school texts, specialist reference manuals, peer review and research papers and articles is simply staggering. The medical community is very much aware, so it's impossible to justify why they act as if they don't, and why nerve damage isn't listed with anesthesia and infection risks on Informed Consent paperwork.

That really infuriates me, the denial, lack of patient/consumer information, the fact we go to doctors, ask questions, yet must struggle to educate ourselves and even then, once you have the name you still have to hunt down your own treatment!

As for treatment, I'm not having much luck. Chemically, only maximum dosage of Neurontin took the edge off, but it stopped working after a few weeks. Steroid injections and repeated rhizotomies have helped maybe 10%. Enough that if I do very, very little it's manageable. But any light yard or housework or more than 30 minutes of work escalates it and it stays bad even if I immediately stop. And I can't be a slug forever. Surgery is not an option; trying to tease damaged nerves from scar tissue frequently make things worse and the area affected is just too large. Now I'm hoping to find that rarity, ultrasound-guided RFA since they aren't having much luck finding them with flouroscope. And the thought of wasting another year with dozens more failed attempts and what the radiation is doing to my guts isn't exactly thrilling, either.

The cruel irony for me is two years ago we were told we'd never have kids and were shocked a few months later to find ourselves pregnant. Then I miscarried, 6 weeks later had the first lap. Worked hard to recover to start family, got hit with the second. So this hasn't just taken away my health, business, and hair..as it drags on and on, it's taking both life as we knew it and HOPED it to be.

I've come to accept not having kids. But I can't accept not getting better.
Reply #7 06/03/08 5:55pm

djbds1

Hey folks...I cannot explain the way I am feeling right now.

Paxton; reading your story makes me feel so connected with you...even if it is over something so simple as that horrible aching we both feel when our digestive tracks decide to go in and out of numbness/pain. You are a really brave soul...dealing with everything you have had to...it might not seem like that big of a deal to you and/or it might seem like your pain is not all that relevant, however; I KNOW there is less than a handful of people in this entire world that would switch places with you...if any. Thank you for sharing your story with me...and PLEASE...do not hesitate to share more and more...I feel so empowered reading about what other people go through. It makes me feel like I can initiate change in the way we as patients, as disabled individuals, and as human beings...are treated/respected/loved.

As for you, thxcarelessdoc...what can I say?

PLEASE, do not worry about boring me with anything you say or how much you share. As long as you are comfortable sharing, I will listen...furthermore...I will respect you privacy and hopefully help raise your spirits with communication, ok?

You really nailed it on the head when talking about how our doctors (if they even deserve that title) try to pull out the "hypocondriac card"!! Recently, many of my providers have insinuated that I have acted in a "hypocondriac"-type manner...and that I am exaggerating my symptoms. Is it a coincidence that those specific doctors are the specialists requested by the work comp insurance company for the defense? Hmm...can you say; "...in their pockets"? I need say no more...

So, how is it that I am too obsessed with my condition, my health, and whats wrong with me? A recent doctor reported that I am overly-obssesed with my body because; I have taken up the study of pain-chronicicity/symptoms, I have ear piercings, and tattoos. OK, so I have many tattoos and two earrings...I HAVE TO BE obssesed with my body...of course!!! Ridiculous!! Oh...so I have gone under the knife 8 TIMES in 3 YEARS because of the complete irresponsibility and incompetence of the California work comp system and the Kaiser Surgical Team...one after another...and treatments for days. If you were in my shoes, would you just sit back and let those doctors TELL you what is going on and what your diagnosis is...OR...would you RESEARCH what the doctors are telling you, look into the statistics, and be well-advised when you sit face-to-face with a doctor who is going to belittle you and explain things in words they know you cannot understand?? What would you do? What I did...I researched...I spent $500.00 on neurosurgery/pain management college texts...I found the statistics, the failure records, the success stories...I got second, third, fourth, and fifth opinions...I DID WHATEVER I HAD TO DO in order to be educated on my condition.

Recent doctors have accussed me of manifesting FAKE symptoms in order to gain access to more narcotics (in order to feed a drug addiction!) and maximize the amount of my settlement (work comp claim $). Would you sacrifice your health, your family, your loved ones, your relationships, your sex life, your financial stability, your ability to be physically active, your emotional balance...and your appearance...would you sacrifice all of those things just to get a dope fix and some extra cash? An informed person should know that California work comp cases RARELY pay out a settlement amount even deserving of an explanation. In addition...I am the FIRST person to admit that I USED to have a drug addiction in 2000-2001...I am not proud of it, but I am proud of my sobriety. I tell EVERY doctor about my drug history...why on earth would I do that if I wanted to score a massive fix? I cannot stand taking narcotic painkillers...they just make life that much more depressing. In fact...in order to DECREASE my intake of narcotic painkillers, I underwent the permanent implant of a Peripheral Nerve Stimulator...TWICE. The first implant was SCREWED up by yet another Kaiser surgeon (horrible implant procedure...wrong location of the implant...wrong technique...unsanitary surgery conditions)...I got a RAPID and DEADLY STAF INFECTION 6 weeks after the implant. I had the implant removed within 8 hours of seeing my stomach distended, warm, and red...and had to pack my open wound (where the battery was implanted originally) with 3 yds of gauze (decreasing in length every week) for the next 3 MONTHS until that 6 inch (originally) HOLE closed on its OWN.

So...after hearing all of that...would you still think about going through ANY of it just to get your fixes?

So yes...there are MANY doctors out there that are willing to say the wrong thing to us (the "right" thing for them)...willing to make us look like idiots to please their egos...and willing to belittle us in front of colleagues (especially when we come to an appointment prepared, educated, and knowledgable of their medical terminology).

It makes me SICK to hear about doctors who DROP their patients. If someone is in your CARE...you CARE for them no matter what. IF EVERY DOCTOR THAT HAD A DIFFICULT PATIENT COULD JUST DROP THEM WHENEVER THEY WANTED TO...WE WOULD NOT HAVE ANY PROVIDERS!! Of course...a patient is going to get a bit difficult sometimes...but seriously!! Do we not have reasonable situations that are questionable at best?

Having your life stripped away from you...and having a doctor who blows you off and denies they EVER DID ANYTHING WRONG...is a horrible match.

Next time you see your doctor (assuming you are still able to...if you would even want to see his pathetic face)...ask him what he would do if his wife was told that she could not conceive and/or carry a child successfully. What would he do if his wife had a doctor who ruined her reproductive system, denied it ever happened, and then dropped her from their care because they just didn't want to deal with it anymore??? Would he just sit back and let that happen?? More importantly, would he insist that it was his WIFE's fault for what happened because of her "irresponsible" choices regarding treatment...OR...would he hold the damn doctor who did the damage responsible?

A doctor who does not CONTINUE to learn and educate themselves AFTER college is WORTHLESS to the medical community. It is VERY obvious that there are countless doctors in the medical community that are permanently stuck in their ways, completely prejudiced, and unwilling to accept the fact that mistakes can be made...by THEMSELVES.

TO EVERYBODY...PLEASE look for this book:

Neurosurgical Pain Management by Kenneth A. Follett

I have used this extremely advanced college text as a reference tool for my condition. Everytime a new doctor gives a new diagnosis...I can come home, open this book, look up the EXACT CONDITION...and verify that the doctor even has a strong diagnosis. What I do know...half of the time...the doctors are just GUESSING. No offense to doctors...just offense to the ones who do not CARE about their patients of CARE about the future that those people WILL NEVER BE ABLE TO LIVE because of the carelessness in that doctors treatment.

I might be 26 without the ability to enjoy my future due to disability...however; YOU have had SO MUCH STRIPPED from your life...thxcarelessdoc...I cannot tell you how deep I am crying inside when I think about what my life would be like if I could not father a child with my girlfriend in the future...

Unfortunately...I have been suffering an average of 20% sensory loss/year in my genitals since early 2006. I am fortunate to feel even a fraction of sensation during intercourse anymore...but I DO get to enjoy the sensation of PURE PAIN rushing through my genitals through the whole experience. Bottom line...we all have something that has happened to us which can NEVER be changed...we all have things that have happened which can NEVER be improved...we all have things that have happened which can NEVER be resolved. Those all might seem to be the same...however...change, improvement, and resolution are SO VERY DIFFERENT in all of our minds...I am sure we can all agree on that.

If I had the power to go back and change one thing that has happened during my treatment...I have NO IDEA what I would change...out of the close to 30 different physicians/surgeons I have consulted...maybe 4 have been decent towards me. 3 for sure have been amazing...and there is NO COINCIDENCE that I am continuing to treat with those 3!!

I really hope that you guys can have a bit of relief...even if its just for a day...ask yourselves this; do you remember the last time you went a whole day without pain, without nausea, without digestive problems from meds/other, without a single depressing thought...do you remember the LAST TIME YOU WENT JUST A DAY WITHOUT a worry??

Would you want to experience one normal day without pain knowing that you would never have that chance again?? For me...I know that my condition will NEVER improve...there is NO DENYING that. I wouldnt want to SUFFER through a day WITHOUT pain...because I will just have to return to my living-hell.

Sorry for the extremeties with my emotional response...I just have strong convictions towards the subject. I wish you all the best. Talk soon.
Reply #8 06/04/08 4:12am

thxcarelessdoc

DJ,Thank you for your support, it touched me deeply. When I read your first post, I despaired, thinking, "my God, eight years..I've only just started" Then I understood about your disasterous neuroectomy and was almost relieved, as if as long as I didn't do that, there is hope. You're a wise old soul for a young man (and that photo of you and your girl is adorable!)

Thank you, everyone for sharing. It helps, and makes me feel tremendous gratitude to realize I take for granted being spared feeling what my dinner is up to, that I can wear underwear (even if they have to be of a cut that never touches the scars or any skin near them) and to be able to at least sometimes enjoy intimacy. I don't have to hassle with WC, and I'm glad our insurance has been pretty reasonable. Best of all, there's no chance I'll have to worry or suffer through another surgery because we can't afford the 20% split anymore, it might as well be 20 million!

As for that "doctor", well, it took a long time to believe the reason he dropped me was because in my state you have 2 years from the date to file...unless you are still under treatment. Dropping me started the clock. Lawyer friends explained that, and doctors backed it up. I don't have a couple hundred thousands stashed away or the energy to fight for several years, and doctors and insurers have it so rigged between them that he'd basically have to be on crack in the OR in order to loose anyway, so I just content myself with knowing he's digging his karmic grave. No kids must somehow be for the best, so I hug my dogs and husband more.

I try to remind myself that there's always a reason things happen and there's no use fretting the "why". And that no matter how much trouble you think you have, there is always someone else worse, so be happy for what you do have.

Y'all did that for me tonight, so I'm sending a big hug right back.
Tomorrow I followup with my neurologist. I like that he's patient, really LISTENS, and even though he's brilliant (got bored wtih law, went to medical school) he is respectful of your own knowledge and doesn't try to bluff if he doesn't have an answer. I'm hoping since Neurontin worked fro a while, if he knows how I can get it to work again and at a lower dose (so vision not blurry)...combine with something else, perhaps? Also giving me my referral (clinic won't see you without one) so I can see if this new place really does do rhizotomies/RFA using ultrasound-guided needles.
Reply #9 06/04/08 4:40pm

Paxton

I just returned from a neurologist appointment. I had attributed my ataxia, nausea, collapsing, and other neurological symptoms to the combination of Meniere's Disease, Marfan Syndrome, and cerebellar brain damage. Now my neurologist tells me that I have a severe B 12 deficiency, that it could give me permanent nerve damage, including, eventually, dementia, if not corrected. She said that my symptoms are typical of B 12 deficiency, and that my PCP should get on the stick and find out just what is causing it and do something about it. Anybody here like to purchase a slightly used body, cheap? Real cheap?
Reply #10 06/05/08 9:08am

thxcarelessdoc

Geez, Paxton. Howcome your PCP has to be the detective? Why can't she get you started on supplementation while your deficiency gets pinned down? Some people just have a diet low in the B vitamins (they don't eat meat/eggs or think their multi should be enough)or their DNA and/or medications (metormin is a classic depletor) or procedures like stomach and bowel recections intereferes with absorbtion, and, of course it decreases with age. There's a number of ways to quickly supplement B12 now, with injectins being one of the fastest. My friend was fully "topped off" in a matter of weeks but she felt better from the very first one. Can't believe you got scolded about this and tossed back to your GP!

I'm glad to report a great neurologist viist. Neurontin worked, then my carrier changed and had to go generic (or pay $546.17/mo for not using generic for same thing cost me $45 under Cigna) and it just wasn't working anymore. He said brand name is critical for many drugs, no wonder, have them send me th paperwork and I'll fight it fof you. But I found the process was for ME to send a letter, which went through a review board process lasting 4-6 weeks, and then even if approved my monthly cost would still be $250, just too expensive. I was so embarassed to have to come back in and say that, and since I'd already tried doubling the generic with no improvement (thankfully he didn't even berate me for doing that on my own) he gave me a sack of Keppra to trial. Not his first choice but one was holding in reserve in case the 'real' Neurontin woudn't do it. He grinned and said if this helps you there is no generic so they can't give you a hard time!

I love this guy. He was also cocnerned the pain specialists had me on Topamax (oh my, very disasterous) when I have a clearly-noted sulfa allergy. So we made a pact they can do whatever mechanical stuff and I'll let him determine the Rx. For the first time in a long time I feel like there's hope. Even if things don't improve as much as I'd like, I know I'm in compassionate, capable hands.

Haven't seen anyone else mention how Keppra worked for their non-disease-related PN. Crossing fingers.