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We answer all types of Neurology/Neurological questions about the brain, spinal cord, and peripheral nerves. Include your age, sex, current meds, and known diagnoses, upcoming/completed appointments, tests, or procedures. We are not physicians. We help explain medical terminology and give support.
Severe ideopathic neuropathy
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pathtoanswers posted:
Hi there, I'm new to this .. I have been suffering with progressively worse "nerve" pain. I have numbness and tingling in legs, arms, lips,fingers,feet.. Severe pain in left ft(getting treatment for planter fascitis) but it is not improving getting worse. I was taking Neurontin but it made my symptoms way worse,,Have been off that for 3 days.Pain shoots down arms and legs and pain in upper and lower back.. Extreme weakness at times, legs feel very heavy, and sometimes like someone has tied weights to them,.So far diag w/Fibro and ideopathic neuropathy, being sent to a Neurologist Dec 1st very nervous. My Rheum ran some blood work haven't found out results yet. Could all this be pinched nerves?? I haven't injured myself. I'm pretty scared!! Too many docs don't take things seriously.I like my new doc so far one visit and they want a neurologist. Any help appreciated!!
Reply
 
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susiemargaret responded:
hello, P --

i'm glad you're going to see a neurologist.

one suggestion i have is that you make a list of your symptoms, when each appeared, and in what order they appeared. this will help you get right to the important parts when you see the neurologist. you might also start thinking of Qs you want to ask and write them down so that you don't forget anything.

i know you are scared, but you are doing the right thing. to the extent you can, try to hold off worrying until you know what is happening. then you can decide what to do next.

please keep us posted on how you are doing.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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susiemargaret responded:
hello again, P --

you might also want to check out the resources (finding specialists in neuropathy, specialty neuropathy centers, support groups, etc.) --

-- on the website of the american association of neuromuscular and electrodiagnostic medicine, http://www.neuropathy.org/site/PageServer , or

-- in the neurology community post from the neuropathy assn, http://forums.webmd.com/3/neurology-general-neurology-questions-and-support/resource/4?@guest .

i hope these help.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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pathtoanswers replied to susiemargaret's response:
Thank you so much for your reply-it really helps to talk to someone about these strange symptoms. I will keep you updated//I am here for you as well :)
 
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Lifes responded:
Hi,

You're right. Too many Doctors dismiss "nerve" symptoms as "all in your head", especially in women. Too many Doctors also dismiss symptoms when patients offer the Doc possible conditions. It becomes a no-win situation.

Neuropathy is particularly overlooked by most Docs. If a Doc does stop to consider neuropathy, the doc usually has no understanding about just how painful nerve symptoms can be.

Neuropathy is complex with many types of "painful" sensations and many possible causes. Look through my post under Resources for this group: The Neuropathy Association In there you will see a link to The Neuropathy Association which has a lot of good information.

Ideopathic simply means "unknown cause". You may get a more precise diagnosis after tests. But even tests can fail to reveal a cause strong enough to convince Doctors. For example, my MRIs in the late 1980s-early 1990s only showed I had "bulging" disks (but not herniated) yet my symptoms were severe. Finally in 2004 (!) it showed complete herniations from my waist down! Yet, Docs STILL disbelieved my symptoms.

Our nervous system is split into regions. For example, a lower back problem (lumbar-sacral) doesn't cause upper body symptoms and typically neck and chest spine (cervical-thoracic) causes mostly upper body symptoms. Many Docs compartmentalize body areas and when symptoms are "head to toe" so to speak, many Docs cannot or do not consider or accept that more than one "cause" may account for symptoms -- unless you've had a major body injury like a traffic accident. Docs seem better able to deal with a patient with symptoms in one region (example: legs only). But with neuropathy, docs still fail to "get it" even if only one region is involved -- especially if there is no specific injury.

The biggest cause of systemic (body wide) neuropathy is diabetes, despite that most diabetics start off with peripheral neuropathy (feet, then legs).

The next biggest cause is spinal problems; cervical (neck) affects arms/hands/fingers and face/head, and part of the chest;; lumbar or sacral (waist and below) can cause pelvic (privates), buttocks, thigh, leg, knee, calf, foot pains.

A large group of neuopathy has varied causes -- from a seemingly "no injury" injury, like twisting a joint during a fall, to chemical injury that might be harder to diagnose.

All that said, you seem to have an assortment of possible causes to sort out. You also seem to have overlapping symptoms. For example, if you have RA you could also have degenerative arthritis. For example, the types of pain you describe point to possible different causes.

True neuropathy is numbness, tingling, burning, pinching, altered sensation, altered temperature sensation, etc. Shooting pain down the back of the legs or down the arms points to sciatica (butt, legs) or cervical impingement ("pinched nerve") or encroachment of bone or arthritis on the cervical spine or spinal roots. There are several spinal conditions like, herniation, radiculopathy, stenosis, or even scoliosis or lordosis can contribute to neuropathy. Degenerative bone disease (osteoporosis) happens during normal aging. ***An injury that occurred YEARS ago can later lead to degenerative changes and resulting neuropathy.

So, in your case, I suggest that you, first, group symptoms by region: 1: chest and above (neck, shoulders, arms, hands, fingers, upper chest, upper back - 2. thoracic (chest, upper back, between shoulder blades) - 3. low back or waist down (front or back of genital area/pelvic/ scrotum in men, vagina in women, anus, buttocks, legs, knees, feet, soles of feet).

See next post....
 
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Lifes replied to Lifes's response:
Continued...

Neurontin is the 1st drug tried for neuropathy. But studies show it may be no better than water or a sugar pill. For some people, Neurontin helps. I have a hypothesis about why Neurontin made your pain "worse". Let me use a campfire as an example, okay. Let's say you built a campfire. You used a combination of dry sticks, logs, dead grasses. Your 17-month old baby is toddling around. Everyone keeps the baby back--the fire is HOT! But baby grabs a handful of burning grass and immediately drops it--HOT! You react by putting cool water on baby's hand and although he's still in pain, the "burn" is limited. You & the adults decide it's time to go; camping isn't worth the baby getting hurt... You throw a layer of dirt to cover/put out the fire and start to load the car. Baby is toddling around--the danger is gone; the fire is "covered". But baby falls--right on top of where the fire had been and starts screaming. Baby's hands and knees are red--you again pour on water---but---- deep in the skin tissues, the "fire" is not out in the baby. By the time you get to the ER, the baby has 3rd degree burn blisters. In the ER, docs put special burn ointment onto the blisters that stops the outer and inner "burn" from continuing.

Your shooting pains are like the unseen "damage" going on after a major burn. Applying water (a low dose Neurontin) can only relieve surface pain like burning, tingling... but even Neurontin does not stop all burning. Different meds do different things-- Neurontin doesn't stop shooting nerve pain, such as sciatica. It doesn't stop Platar Fascitis pain either.

So, by way of my example, Neurontin probably "covered' the lesser of your pains which then only intensified your bigger pain. In a way, that is good because you experienced the primary pain without other minor pain(s) to confuse things. I'd suggest you write a few descriptions of that worst pain, where it started (buttock, low back), it's path (from buttock to back of leg), intensity (scale of 1 to 10), etc. Think about what minor pains or symptoms the Neurontin did help, even though you felt worse pain.

Lastly, I'd push for MRIs of cervical and thoracic regions, and lumbar-sacral region (i.e entire spine). Thoracic is more important if you have MS in your family; I'd really push for cervical and lumbar-sacral.

Make SURE they have done an A1-C (bloog test A-one-C) to be sure you don't have diabetes (but from the description, I bet no diabetes but instead a degenerative or arthritic issue).

Ask for an EMG of low back / legs, and arms.

I won't sugar coat this. I've suffered true neuropathy (no shooting pains) for almost 12 years. Narcotics do not help "nerve" pain. Try Lyrica, Trileptal, or even one of the older anti-seizure meds. All have side effects. None can be stopped abruptly. You may need physical therapy for sciatica. Neuropathy is a difficult to diagnose and difficult to treat condition; no 2 people react the same to meds. Most of all, YOU will be the only one who can say what helps YOU. You may have to see several docs; you may have to educate every doc you see. Point out the difference between shooting pain & neuropathies. Tell them to read The Neuropathy Association website. Do your own research and push the docs to really treat your pain.

IF a cause can be found, please know that surgery may not remove the pain. All spinal surgeries have risks so make sure to know those risks before trying surgery.

Please let us know what the doctors find.

Lifes
 
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pathtoanswers replied to Lifes's response:
Wow Lifes that is alot of info, thank you i loved your analogie about the toddler how true. Thank you for all your insight. I did just get back some tests i have high sed rate and high CRP along with high bun/creatine . Does this mean anything?Besides there is inflamation, Thanks again!
 
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pathtoanswers replied to Lifes's response:
Hi I went to the Neuro, not sure if you saw my post. He ordered a MRI brain and EMG RLE(right lower) and a bunch of blood work including the A1C had that done Sat so waiting to hear. Your right Diabetes has alot of my symptoms too. THe waiting game is hard.

Also my Neuro put me on Cymbalta for now. For pain. Another thing is my chin,neck went numb the other day and lasted all day. (before Cymbalta) my eye doc did not see ON(optic n?)MS but did see evidence of worsening near sigteness and stigmatism(said common w/diabetes) so right now i'm in limbo land.

PS. I know right now that i have High C-Reactive Protein(inflamation) high bun/creatine, h cholestrol. PS they are testing Vit D and B-12.

I will post on new discussion when i find out anything!
Thanks for your help
 
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Lifes replied to pathtoanswers's response:
A high SED is so non-specific it should be eliminated from testing, yet doctors continue to use it simply to confirm what should be already apparent or what they suspect. All the SED shows is if there is inflammation "somewhere" in the body. You could have a moderate or high SED or a very high SED and be no closer to a diagnosis! Everything from infection to arthritis can increase a person's SED rate.

I'd be more concerned with the high BUN & Creat, depending on other symptoms & what the Dr is thinking for Dx. I'd ask if it is high enough to warrant re-testing and when.

The A1-C can show how your body used glucose during the last 3 months, so it is very specific for a Dx of diabetes or pre-diabetes.

B-12 can help some people with neuropathy pain, but not everyone's cause is low B-12.

Lifes
 
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pathtoanswers replied to Lifes's response:
Thanks I will post soon as i get some blood work back. I know the Bun thing has me worried. It has been on 3 seperate occasions with bloodwork Yet when they do a urine test in ureologist office does not show dehydration?? Haven't spoke to the urologist about it yet.
 
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Lifes replied to pathtoanswers's response:
It just occurred to me how they've already "piece mealed" you out: you can count it by the number of "ists" who have been in your life in a short time or over time. Rheumatologist, Urologist, Neurologist (and you probably had another "ist" or two that you haven't mentioned even if it lacked the "ist" at the end). These are of course in addition to a Primary GP who may have his/her own "ist' (internist).

We used to discuss in school just how much the "ists" had served to carve patients up into 'territories", when what patients need is holistic care (i.e. viewed as a whole body and whole person).

The bottom line is most of what you've described doesn't require all the "ists" (and associated time and costs). The problem with "ists" is that they rarely, if ever, take a whole body approach and come up with "a" diagnosis (or two). In reality, all the things the "ists" are doing -- and not doing -- can (and should?) be done by your Primary. All the bloodwork AND follow-up bloodwork, the MRIs, and in reality the EMG, can all be ordered by a GP. And GPs can use the "Impression" listed on tests to guide their next steps.

If you see an "ist" who seems to be REALLY helping move your case along from eval to diagnosis, that's great. But if you find you're just getting run from one "ist" to another, with no resulting diagnosis, you may need to put your foot down. The fact is, going to "special - ists" costs patients and insurance companies thousands of wasted dollars. And wastes time and energy-- which is "costly" when you're in pain and suffering. When GPs start issuing referrals, patients need to ask their doctors, "What can that specialist do that you can't do for me directly?"

Just be cautious that the referrals don't end up running you around--for nothing.

Lifes
 
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pathtoanswers replied to Lifes's response:
Well said Life; I'm 39 and i've been to way too many specialists, only to say that they are only part of one part of the body..Really rots..I know that evreything i have gone through is connected to eachother. Another good point is that some people can get diagnosed rather quickly and others it takes years..And very true it is time wasted .. I just want to get answers and move from there, SO tired of this.. I try to stay positive but it really is taking a toll on my quality of life.That's why i left my other GP because they would bounce me around and then never follow up with what is going on with me. I've been told by some "You don't want to have that" or "Your too young" "You need to take time for yourself" "go off dairy and wheat, and you will be your old self again" I cried just the thought of being the old me made me cry.. I wasn't perfect but i was functioning a heck of alot better. Sometimes you start to second guess yourself even-until signs of numbness, wierd creepy crawly nerve thing going down your legs , numbness in right leg, numbness in chin,and neck and feels like back of head? THe list goes on.. I have a doc apt with my new primary doc today and hopefully will find out how my blood work went. Sorry so long

Thanks I really appreciate you listening, had to vent


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