Peripheral Neuropathy?

[karenlu]

Started with numbness and pain in left foot toe area.  Felt like there was a wedge between big toe and toe next to it.  After 4 months, many doctors (GP, podiatrist, vascular, pain clinic, ortho, went for EMG but could not tolerate after 4th needle.  Left with excruciating pain and numbness half way up my leg.   Dr. that did EMG lost results and report had erroneous information.  Was first told I have compressed nerve(s) in foot, then ortho did nerve block which increased pain.  Was sent to neurologist.  His diagnosis - peripheral neuropathy.  Started on neurontin 100 mg./day, now increased to 200 mg./day.  Some mild, minor side effects but absolutely no pain relief.  

How can I be sure PN diagnosis is correct?  How much neurontin will I have to take to relieve pain?  Will I be taking neurontin for the rest of my life?  What long term effects will there be from neurontin?   Is there anything else I can or should take instead of the neurontin?

Can anyone help?

[CCF-Neuro-M.D.-JT]

When you say peripheral neuropathy, I'm assuming you mean a generalized polyneuropathy which is generally numbness/tingling/pain starting in the legs and typically symmetric or at least involving both legs.  If so, then the nerve conduction portion (shock part) of the EMG may be able to further characterize the problem or rule it out. If it was negative, then more specialized testing to look for a small fiber neuropathy may be done in an autonomic lab.

If however, it looks more like there's something going on in only one leg and it's progressive, then the needle exam from the EMG and possibly an MRI of the lower back would be important to help localize the problem. Unfortunately, it looks like you may need another EMG as the previous study was suboptimal and is actually now lost.  Consider a major academic center where there are neurologists who have specialized in EMG/neuromuscular disorders.  If the pain is unbearable, talk to your PCP and see if you can get some Xanax or something to calm you down prior to the test so that you can tolerate it better.

As for pain, we usually go up to about 2-3gm of the neurontin (200mg is a baby dose) before we give up on it.  It's a pretty safe drug that doesn't appear to have any serious long term effects.  The biggest complaints that we get are sedation.  Until this problem is figured out, it's difficult to say what the best method of treatment would be.  But elavil is also something that may help with nerve pain.  Best of luck.

[Kit1]

It is not surprising that you have no pain relief from such a tiny dose of neurontin. I have taken that drug, and these are a few things my neurologist told me:

* Most people begin to feel some pain relief at a dose of 1,500-1,800 mg
* The usual way to start taking neurontin is to start at 900 mg (one 300-mg tablet 3 times a day), then add 300 mg (one tablet) about every 1-2 weeks
* You can take up to 3,600 mg a day without worrying too much that it's getting to be a lot for your system to handle
* There may be a side effects like dizziness, sleepiness, and mental "flakiness"-- you will have to balance these for yourself against how much pain relief you are getting (ie, you choose when to stop ramping the drug up)
* You should taper the drug off slowly just like you ramped it up slowly

So I'm surprised your doctor would put you on such a small dose-- it can't possibly have much effect! Neurontin is a great drug because it isn't processed in the liver. (You just pee it out in the same form as it entered). That means no dependence and no accumulation in your body. It's a very safe choice for pain relief, so it's a good way to start.

[karenlu]

Thank you for your replies.  My problem is with my left foot, primarily in the area of the big toe and the toe next to it.  There is no problem in any other area of my body.  The pain and numbness are confined to my left foot.  The sensations run the gamut of dull, sharp, burning, tingling, and every other word I've ever heard to describe pain.

After the NCV portion of the EMG, the Dr. told me I had 2 damaged nerves.  I am 51 years old and have a history of phlebitis for 31 years of those 51.  At one point, the podiatrist theorized there might be a varicosed vein pressing on a nerve.  

The neurologist I saw did the exam with the tuning fork and a wheel-like device to test sensations on both feet.  At the point where I could not feel the vibration on my foot, he placed the tuning fork on my hand (on both sides) and announced I had diminished sensations in both feet.

The EMG experience I had was horrific.  I had excruciating pain for 5 full days afterwards and won't consider going through that again under any circumstance.  

As for the neurontin.  I was on 100mg for a week, then 200mg for 4 days and now on 300mg 8 days until my next appointment with the neurologist.  At this rate, it sounds like it'll be a very very long time before I get any pain relief at all.

[achty]

I have also been diagnosed with peripheral axial sensory neuropathy.  I haven't had much pain but have been experiencing tingling, numbness, etc starting in my feet and progressing upward.  It is now just above my knees and going higher.  I have the same symptoms in my hands but it has not progressed up my arms so far.  I was glad to hear about the lack of long term effects of neurontin use as I started on 100 mg per day, added 100 per day on the first of each month and am now up to 700 per day going to 800 per day on April 1 and then on to ???  If anyone has more experience with the long term effects of neurontin or the neuropathy itself, please let us know.

[johneasy]

I have also been diagnosed with peripheral neuropathy. I first complained about my right big toe and my PCP immediately diagnosed my symptom as GOUT. When continuing to complain I went from Colchicine, and Indomethacin SR, to Allopurinol.
No-longer complaining of my right toe but now both feet and symptom felt slightly different, a lot of burning. My burning progressed now no longer restricted to my joint in my toe, but was radiating through out both feet (more intense in my left foot). This developed over six months. When I mentioned to the PCP that my feet felt raw (much like shingles) I was sent to a Neurologist. After three EMG’s, MRI’s of back (three places), neck, and skull; it is not a pinched nerve, MS, nor the big “C”. I have had cultures of my eyelid’s, my lings, and a nerve harvested from my left ankle. Again we can tell you what my problem is not!  
I have had so much pain and tingling, numbness, etc starting in my feet and progressing upward. It is now just above my left knee and into my left hand and forearm. I have the same symptoms in my right hand and right leg but not near as intense. I have been on Neurontin 800 mg four times a day now for about two months, I am ready for an increase I do OK after the increase for about a month then things start getting worst, in about another month the Neurologist has to increase my dosage. I have been on Neurontin for almost two years now and at this rate I will be at the 3800 mg max by year 200. I live close to Atlanta, GA and if anyone can provide any suggestions I will always be in your debt.
My Neurologist has run out of ideas, he is now directing his attention toward something called “Myelin”.
At this time I am not hopeful for any long term relief and only a miracle will provide a cure..

[c.light]

Hi!  How long ago were you diagnosed with peripheral neuropathy?  Can you tell me what tests were done to reach this diagnosis?  I have been experiencing tingling in both feet and legs which has progressed to some burning and sensations of numbness, varying in intensity throughout the day.  I've had MRIs and bloodwork, ruled out MS, Lupus, RA, etc..  When I asked the doc on this forum, he suggested that it might be a PN.  I see my neuro on Monday and am going to ask for more tests, so I was just curious about your case since it sounds similar.  

Thanks, Colleen

[Hmmm]

Hi, I have very slowly been losing feeling in my feet. I'm talking 15 years. It started in my big toe, just the tip, and has been inching up my feet ever since.
My father was diagnose with peripheral neuropathy in the 70's after similar symptoms.
I have only spoke of this with my gyn. because we are friends, oh and a chiropractor.
She said she has numb fingers and takes B Complex and suggested it could be similar defiency. So that is what I am doing.
I went to a chiropractor he thought it was a pinched nerve in lower back but it keeps spreading after many adjustments.
Now my big toe is like catching in the joints and pops all the time.
I have basically tried to ignore this but will have to do something soon because my feet are causing me to walk funny. I have shooting pains sometimes and it will hurt more in one foot than the other at times. The numbness is causing me to spread my toes out so I can balance myself better. The bed sheets are starting to aggrevate me when I have them over my feet.
There could be something to the B vitamin defiency I guess, I read it can cause an irregular gait if you are low.
Am going to PCP later this week and will bring it up. Don't hold out for much in this area though, will write back with his ideas. Thanks for listening, Hmmm.

[candypom]

I was in a mva 7 mo ago had back pain and leg pain since, back has improved to tolerable, but have very severe leg pain especially at night. Perocet no help, tordol inj 60 mg gives some releif.  Most comfortable in recliner.  Md thinks it may be neuropathy due some back injury.  Mri showed some facet inflamation (inflammation) and possible SI dysfunction otherwise unremarkable.  Seem physotrist had 2 epidurals and 1 SI injections had several medrol packs anti inflamatory meds, Pt, to name a few Now will go to neuroligist and then to mayo if no improvement.  Many nights with 2-4 hour of sleep. Any one have similair problems?

[karenlu]

There is a wealth of information on the web on peripheral neuropathy.  From what I understand from both my research and the neurologist I'm seeing, in approximately 40% of neuropathies the cause cannot be pinpointed or identified.  Most searches will come up with diabetic neuropathy as diabetes seems to be the leading cause.  Other primary causes are alcoholism and vitamin deficiency.

I am still not convinced that I do not have one or more compressed nerves in my foot.  My personal opinion is that there is either involvement with my back or my history of poor circulation, i.e. phlebitis.  Since the problem is only in my left foot and nowhere else, I feel the PN diagnosis is a catchall I've been pigeon-holed into.  Right now I am so desperate to have this severe pain reduced that I'm willing to go with the neurontin for awhile.  If I can get the pain to a level where I can at least think clearly, I intend to pursue an alternative dignosis with the Dr. I saw at the Rehabilitation Institute of Chicago Pain Clinic.  

In direct response to Colleen, my diagnosis was made on 2/26 after having seen my regular GP, a Podiatrist, Vascular Surgeon, RIC Osteopathic Dr., Orthopaedic Surgeon and finally the Neurologist over a period of 4 full months of debilitating, sometime excruciating pain.  The tests I've had are:  blood test (rule out diabetes, thyroid problem, etc.), MRI (rule out bone problems like cysts), vascular doplar (blood flow study), and EMG (nerve/muscle test) which was totally mishandled.

My last visit to neurologist resulted in being increased to 2X300mg or 600 mg per day.  This is still a baby dose.  He feels, however, that it is imperative to start slowly because of the possible side effects.  His plan is to increase by 300 mg per week until I have pain relief without "sleeping 18 hours a day".  Even at this small dosage, I am very very tired all the time.  At best, the effect on the pain has been negligible.  I still have periodic excruciating pain and no semblance of a normal life.  I could no sooner hold a job than fly.  My shopping, housework, etc. is confined to sporadic rare time periods where the pain is tolerable enough to accomplish such routine tasks.

I saw my dentist 3/15.  He feels the long term effects of neurontin may very well lead to losing all my teeth.  Dry mouth is a side effect, which leads to tooth decay and gum disease.  So, while neurontin may be one of the "safer" drugs, it is not without serious side effects.  I have absolutely no intention of allowing this drug to cause me to lose my perfectly good teeth.

Sorry for rambling.  I am in pain, depressed, disgusted and tired of the medical business "practicing" on me.

[Andrea`s_mommy]

Hi all, I`ve been having neurological problems 7 mos. now. It all started after my baby was born last Aug. I had her vaginally w/ an epidural. So far all tests have been normal, but I`m seeing another neurologist because of persistent symptoms. Any other women have these problems?

[suzieq57]

Hi everyone,I just joined the board and wanted to introduce myself to you all.I also have peripheral neuropathy and neuropathic cellulitis and I am interested in as much info as I can find.


suzieq

[suzieq57]

Hi all,I'm new to the board and just wanted to introduce myself.I also have peripheral neuropathy and neuropathic cellulitis.I am interested in finding as much info as I can.

suzieq

[suzieq57]

Sorry about the double post,it wasn't showing up the first time..

suzieq

[c.light]

Hi!  Can you tell me anything about your peripheral neuropathy?  How was it diagnosed, how long have you had it?  I am having problems with my legs and I have a return visit to my neurologist on Monday, so I'm trying to gather as much information as possible to discuss with him.  The doctor on this board suggested that I should be tested for a PN.  Thanks.

Colleen

[Jande]

Hi,
My peripheral neuropathy was due to a Tetanus shot--have you had any vaccines recently?  After the shot, I had a slow and progressive body insult that two years later has left me with deep burning/tingling in my muscles, stiff hands, fatigue and chronic pain, and a definite inability to walk very well.  Most physicians do not relate symptoms to vaccines, so it is difficult to convince them of the source.  

I had a B-12 shot the other day and thought I was only getting the vitamin, but I found out that the preservative was aluminum.  The next day my hands and toes were cramped and they still hurt.  As you may guess, now I am very much against any vaccines for me.  They are very dangerous and can cause very painful peripheral neuropathies.  

I take Neurontin as well (900mg)and am afraid to increase the dose because most people end up taking large doses.  It is expensive and you cannot stop it all at once.  I also take large does of Motrin and Tylenol along with the Neurontin.

Just some thoughts.  Thanks.

[Lutonian]

My EMG was clear and so was my MRI. I have Foot Drop and my Dorsiflex is very bad. Also foot invertion, pain in the Sciatic Nerve. I am being sent fron, local hospital, very shortly, to The Royal Free Hospital, London. I understand one of the tests will be a Lumber Puncture. Any idea of what is wrong. Maybe some of the forum members , have the same condition.

[grandpas girl]

I am extremely concerned about my grandfather, he is fifty four years old and has recently been diagnosed w diabetic neuropathy.  He does not have insurance to get the medical attention he should have.  My question is, what other than medication can provide relief for this pooor man.  I am a massage therapist and our field does not cover this disorder specifically and I was wondering if anyone knew of the affects massage therapy can have on the feet.  I have found that he finds some relief when they are massaged gently and raised for a long period of time, along with constant application of ice.  What else can we do for him and does anyone know if what hes doing is beneficial or not????????????????-please help.

[Katenyc]

Hi all,

I am new here.  I don't have a diagnosis yet, but my neuro is leaning toward peripheral neuropathy.

There is another woman -- Andrea? -- who posted here recently who said that she has had lots of neuro problems since giving birth last August.  I also had a baby last August, and my neuro problems started in October.  I have had lots of tests -- MRI's, numerous blood work.  I am scheduled for an EMG next week.  So far they ruled out MS and I've just been re-tested again for rheumatoid arthritis.

My various symptoms have seemed to settle in my hands.  For about 8 months now, I've been getting pins & needles/tingling in my hands at night when I sleep.  It's only the exterior portion of my hands.  I mentioned this to many neuro's but they always blew it off and were not concerned.  Lately, though, the symptoms have graduated and become more severe.  My hands are in a great deal of pain most of the time, but worse when I wake up in the a.m. or the middle of the night.  I still have the pins & needles from time to time, but it's more the pain and the stiffness now.  My pinky fingers are also really bothering me.  This may sound strange, but they feel like they are disjointed when I wake up and it takes a good amount of time to get them just about back to normal.  My arms have also started to hurt.

I had an MRI done of my cervical spine about 7 months ago, and it did not show disc compression.  The neuro told me that nothing in my neck was causing the tingling.  I guess my worst fear is that we won't ever find out what is causing this, and then what?  Just treat the pain -- but what is happening to my body?  I have a little boy and it's getting really hard to hold him some days.

Glad to have found this site.

[Mysterious Stranger]

This is for the many posters on this board who report variations of peripheral neuropathy and MS-like symptoms, especially the many who are frustrated that conventional medical testing and workups have left you without solutions, or even diagnoses.
In people who report sensory and/or motor disturbances, tingling, numbness, and other unusual sensations in BOTH upper and lower extremities, and/or the face, the cause is most likely not a localized lesion, nerve root entrapment, or other focal problem. These types of complaints smack of a systemic problem, one attacking the body's entire nervous system and possibly the cardiovascular system as well. Environmental exposures, namely chemicals should be suspected, especially when there is a history of such exposures.
For at least some of you folks with these types of symptoms, I would strongly suggest you ask yourself whether you consume aspartame in your food. I would bet that many of you use diet products, especially "sugar-free" lines of products containing the now ubiquitous aspartame artificial sweetener (sold as "Equal" and "Nutrasweet"). The two amino acids making up 90 percent of aspartame are neurotoxins/excitotoxins in large enough doses, which themselves can cause problems with the nervous system. But the most harmful constituent of aspartame may be the 10 percent of the product that binds the two amino acids together -- methanol (wood alcohol). That substance breaks down in the body into first formaldehyde (used in embalming) and then formic acid (the poison in ant stings).
Methanol is a powerful neurotoxin, one that may slowly be pickling your nervous system. The damage may be permanent, but you can at least halt the progression of methanol poisoning by halting your intake of the poison. There are, on the other hand, many instances of people having improvement in their symptoms upon eliminating aspartame from their diets.
I certainly understand anyone being skeptical that aspartame is the cause of their problems, but there is an easy way to prove this suggestion wrong. Simply eliminate ALL aspartame from your diet for 60 days, and see if your symptoms improve. If you need artificial sweeteners in your life, there are at least four or five others that are available.
Many of you have expressed great frustration at the inability of the medical profession to even identify the cause of your problems, let alone treat your illnesses. What do you have to lose by trying my suggestion?

[Jerseygirl2]

This is for granpas girl. The massaging you are doing is very a very good move.  It improves circulation, this is why he is feeling better just afterwards.  I too am a diabetic, going into 6 yrs now, so I know what he is feeling with the diabetic neuropathy.  However there is something else you can do for him, is watching his diabetic diet, making sure his sugar levels are low enough.  When you get the sugar levels back down to normal, the neuopathy with stop on its own.  My dr explained to me that the body has its own defenses and pushes the sugar away, but, it pushes it down, down toward the legs.  In doing so, it begins to affect the nerve endings causing the tingling & pain.  I had followed my drs advise, got my sugar down to normal, and have taken little if any neurontin (where I was taking 3 300mg a day, mostly at night.  But, I also am on medications for diabetes.  Maybe find him some sort of clinic that can help him, because he will need meds to help him with his sugar.
Hope this helps.
Jerseygirl2

[Freddd]

I have multiple neuropathies, fatigue and dozens of symtoms.  To make a long story short, Enzymatic Therapy Bioactive B12 (there are brand differences and some don't work) worked wonders starting 15 minutes after putting that sublingual pill under my tongue.  It cost $8.00 or so to test this hypothesis.  Good luck.

[raising 2 grandchildren]

my husband was diagnosed a few months ago with peripheral neuropathy. Like another poster here, he has phlebitis in his legs and feet. Is there some component of the problems with the phlebitis that is contributing to the pn? Also, he wears very tight stockings for the phelbitis. Could this make the pn worse?
He does not have diabetes.
Ellen