View Full Version : No reason for neuropathy
05-05-2003, 11:55 AM
Just had a Dr put a name to stabbing pains in both feet. This has been going on for 2 years with severe foot pain that wakes me up from sleep. Was told that I had fibro and pushed from Dr to Dr. My eye Dr told me that I have eye nerve damage that is not going on now but has been at one time. The GI Dr told me that my stomach is slow at dumping the food and that it is some kind of nerve thing. I went to my family Dr and asked her to help me put it all together and help with all the DR's. She said what does the rheumatology Dr say. I made a appointment with him and he said what does Family Dr say. I told him she said to see him and he said need to see neurologist Dr. I told him I tried and it would take 3 months he said I will get you in. I have no reason for the neuropathy. I am overweight and wonder if this is the cause. It is getting really bad. I have seen the neurologist 3 times and he did the emg tests twice and both times it came back neg. Anyone have some input?
05-06-2003, 02:33 PM
I also have neuropathy with no known cause.
My feet start tingling & then go numb. The ring & pinky fingers on both hands do the same thing. I also randomly develop a burning sensation in my left calf, like I'm standing too close to a fire. I also have trouble walking - like I'm losing my balance.
My neurologist has performed every known test - started with bloodwork, then X-rays, then a MRI, and then just about every neurological test they have. Everything came back utterly normal. He said there's just no logical medical reasons.
I think the diagnosis was "ideopathic peripheral neuropathy" and he said there's really nothing they could do for me. Luckily, my symptoms aren't so severe they interfere with my life, so I can live with them.
05-06-2003, 06:01 PM
I definitely have a nueropathy and the neurologist is looking for the cause. I do have sarcoidosis which could be the cause. I just had a spinal tap (no results yet) and a glucose tolerence test. The GTT showed I was hypoglycemic. I know diabetes is the number one cause of neuropathies. My question is does anyone know if hypoglycemia can cause them too? Of course, I will see the doctor next week for the rest of the results. The EMG did come back abnormal and that was the reason for the further testing.
05-30-2003, 09:03 PM
I also had numbness in my arms, pinky @ ring fingers. My right thigh would go numb and start a burning sensation. I thought maybe I had a pinched nerve so I went to a Chiropractor and started taking vitamins on a daily basis..Vitamin E is good for circulation....Vitamin B is good for nerves and iron once a week has seemed to help. Since I have been seeing the Chiropractor the burning and numbness in my leg and arms has subsided. Hope this helps someone else out there...Rhonda
06-26-2003, 09:15 PM
I will try a chiropractor
07-25-2003, 09:53 PM
I developed Neuropathy after going into septic shock from a ruptured colon. I was in a comma for 4 weeks, and was in and out for the better part of 4 more weeks. I woke up and noticed my left leg was numb. Drs said nothing to worry about. 4 days later, nurse finally talked one of them into a sonogram...I had developed a blood clot in my leg. Blah blah blah later, I have intense burning, freezing, pins and stabbing pains in my left foot. Cause was prolong periods of time laying in the same position. I also have the left hand numb and weak. Other leg is numb on the top layer of skin, but doesn't hurt much except for an occasional red hot stabbing pain here and there. After none of the regular pain meds worked, a neurologist put me on neurontin, 1200 mg 3 times a day. Helped somewhat, but night was still bad...so I was put on oxycontin, every 12 hrs. First time I was pain free in weeks.
That was 5 mths ago. They have played with the neurontin dose, but it works best at 1200 mgs 3 times a day. Off of the oxycontin, now I take Norco (oxycordone) as needed. I am never without pain. No one has any answers. I am under a pain mgmt clinic's doctor care. He is only interested in the pain medications, not the neuropathy. He says that part is up to the neurologist. ?????? He has no clue.... it seems to me, he is only interested in being a pain pill policeman, not helping chronic pain suffers. Whatever. I will not live my life in pain or doped up. I'm only 46, and that is way to young to toss in the towel! I wish I had some suggestions that may help someone... but at least I understand.
07-27-2003, 06:12 AM
Living like we do with all this pain...well, it's...well...I just can't think of any nice way to phrase what this is. (((gently hugs to all)))
We need to hang in there and keep trying.
Hope we all find the info we need.
[This message has been edited by riceneuroni (edited 08-03-2003).]
I am currently seeing a neurologist who seems to think I may have a combination of nerve damage from several years of constant swelling in my feet and ankles from numerous hypertension medications and from recently diagnosed diabetes (non-medication, but diet changes at this point). The pain is 24/7, particularly worse at night. Tingling, then partial numbness with frequent stabbing and shooting pain from the bottoms of my feet through my lower legs. I was treated with Neurontin for approximately 4 months with an ending dosage of 1200mg/day. The Neurontin did nothing to relieve the pain. I was then switched to Topamax and after 3 doses experienced most undesirable side effects...complete loss of balance, drastically impaired vision, constant dry mouth, shaking of the hands, and total fatigue. I could not even stand without assistance for approximately 6 days. I immediately stopped the Topamax after the first 3 doses and I am now semi-back to normal with the exception of dizziness and fatigue. Yesterday, the neurologist gave me samples of Keppra to try and I now have had 2 doses, without any additional side effects at the moment. He also has instructed me to take the antioxidant...Alpha-Lipoic Acid (ALA) which he says he has followed closely through clinical trials in Europe. He states the European clinics have had remarkable success in neuropathic pain reduction in these trials using intraveneous treatment with this powerful antioxidant. I understand that clinical trials (oral) are currently being conducted in the USA. I just purchased a bottle of ALA at the Walmart SuperCenter here (only place I could find it locally). Together with the Kappra, he believes it may offer some level of pain relief. At this point in time, I am just about ready to give most anything a try! I'm 50 years old and refuse to continue to be homebound by the pain in my feet. If I have improvement in my condition, I will be sure to let all know by posting.
07-30-2003, 04:48 AM
Kcisco, there are more tests that can be run. There is a spinal tap for one. They can look for bacteria in the spinal fluid as well as nutritional imbalances.
I discovered for myself that mega doses of methylcobalamin B12 works wonders for me. It's keeping the pain and swelling way down and I'm still going to work because of it.
Hang in there all, and never give up trying to find a doctor willing to look for a cause.
(((gentle hugs to all)))
07-31-2003, 06:04 PM
Riceneuroni, Is the methylcobalamin B12 something that you can buy anywhere or do you have to go to healthfood store? Right now I am taking a good B complex vitimin, but don't notice a big help. I started having leg weakness in Dec. of last year and now its progressed to the stabbing pain, electrical shocks, and complete numbness. Before I started taking a diaretic each day, my feet were swelling up so bad that I couldn't walk by the end of the day, now that problem is alot better. When I go barefoot tho, it still feels like I'm walking on pebbles, very strange feeling. After having MRI's and an EMG, the nuerologist says this is caused from a spinal cord condition that they discovered on the MRI. He just told me that I would continue to get worse and need a cane one of these days, but I'd like more information than that, so will make a list and go back to him and try to nail him down to some answers, but I'm not sure that he will have them all. I would like to know what and if we can do something to make this neuropathy go away or are we going to have it for the rest of our lives, is there some exercises that we can do to slow the progression of this down? Would some kind of physical therapy be in order? Or how about acupuncture therapy. My primary dr. can't answer any of these questions, he told me to ask the neurologist, so guess that I will, wish me luck.
08-01-2003, 04:38 AM
I'm sorry for your pain and troubles. It seems to have come on fast and furious.
The fact that somebody saw something that might be a cause is encouraging because it might be treatable. Hang on to that hope. Even if 5 or 10 doctors end up telling you it's not treatable, there is likely a doctor out there somewhere that can treat it.
The methylcobalamin B12 can be purchased over the counter, but not too many places have it.
Have you had any relief? What amount of ALA are you taking?
You are really lucky to have gotten the spinal tap. How did you arrange it? Can you tell us what sarcoidosis is?
(((gentle hugs to all)))
[This message has been edited by riceneuroni (edited 08-01-2003).]
08-01-2003, 09:00 PM
Thanks so much for the info. on the B12, will check it out and try to find me some. Lets hope that it works. Right now I'm on 1500 mgs. of neurontin each day, and along with advil during the day and one darvacet at nite, it at least keeps the pain level down to the fact that I'm not crying in pain. Do any of you also experience the feeling of wearing very tight sox on your feet, especially at nite time?
Hi Rice...not much to tell yet about the Keppra and the ALA. Neurologist said it would probably be 2-3 weeks before noticeable improvement in pain (if I'm one who responds and lucky). Right now, starting on the low end of ALA 100mg 3xday. Will let ya know...take care.
[This message has been edited by CJW (edited 08-04-2003).]
08-04-2003, 07:14 AM
I also have neuropathy in hands and feet that currently isn't explained. A brain scan showed lesions that looked like MS but it isn't that. I think I have had every diagnostic test possible apart from brain biopsy and I'm not going there unless it gets life-threatening.
Latest theory is "vasculitis" i.e. inflammation of the blood vessels supplying the nerves due to auto-immune problems.
I can get by with anti-inflammatories (diclofenac) and a range of painkillers but I think it is getting worse, either that or I am getting tolerant to the medication.
I just had another brain scan to compare with one 6 months ago to see if it is progressing, I don't get the results until 26th because my Neurologist is on vacation. If it is then they want to knock out my immune system with Cytoxan and Prednisilone. The theory is that when the immune system recovers it will behave normally.
That is pretty scarey and no doubt means yet another stay in Hospital but it is close to ruining my life so I guess I go along with it.
Worst part is my wife died nearly 10 years ago from another form of "vasculitis", a really terrible condition so I can't help thinking of that.
I posted in other forums my question - Anyone had experience of "Cranial Vasculitis".
Take care, Brian
08-05-2003, 07:07 PM
So sorry to hear about your concerns, especially with your wife's passing from it. Is this a rare condition? Don't think the worst! While you're waiting for the doctors, maybe you can focus on finding some vitamin treatments or something. I've been doing that a few months and it's really helping keep my sanity.
I have some incredible news to pass on. You all may already know this, but it about knocked me out of my chair. I'm still in shock.
Did you know a low level of any ONE of a long list of nutrients can cause neuropathy? I didn't.
Turns out there have been studies all over the world looking at the relationship between neuropathies and many individual nutrients. Our NIH (National Institute of Health) has a lot of info. A PhD by the name of Lark Lands has gathered info from studies around the world.
I've made an appointment with an internist to try and help find out why I suddenly need mega doses of B12. If anyone has any ideas, please, pass them on! I can tell I'm fighting a losing battle on this front. I am sticking with the gluten-free diet for now since it is a primary reason for nutrient deficiencies. There are lots of other possible causes, though. I'm also starting a vitamin therapy that supplements with the nutrients known to impact neuropathy.
My spirits are high and I'm really hopefull. http://www.healthboards.com/ubb/dance.gif
http://www.healthboards.com/ubb/love1.gif KYIMP http://www.healthboards.com/ubb/love1.gif
[This message has been edited by riceneuroni (edited 08-06-2003).]
08-24-2003, 08:39 PM
Any results from spinal tap?
Fellow neuropathy sufferer in MI.
Hey Everyone...just wanted to report that in the past 4 weeks of taking Keppra and Alpha-Lipoic Acid, my pain has improved in my feet. I still have pain, but on a scale of 1-10 it's gone from a 10 to a 5! Nights are still the worse, but at least I'm getting a little more sleep that I was before. Neurologist says to keep with the program for several more weeks and then we may experiment with increased dosage of ALA. Hope all of you are hanging in there and finding some level of relief.
08-26-2003, 09:44 PM
cjordan.............my feet feel as if in a vice, but I have L-S spinal problems.
08-27-2003, 06:13 PM
Yes, I also have spinal problems that are causing my neuropathy.
08-30-2003, 02:25 PM
CJW - I'm glad to hear you're feeling better.
Can you give us some more info on ALA? Do you have any idea why your neuro suggested this particular approach for you? I know it's been helping a lot of folks, but are there any specific indicators/symptoms that show ALA in particular might be a good course of treatment?
Have you had ANY side effects?
Do you have neurosarcoid? If so-how did it manifest? What tests found it and what therapy treatment do you follow? Is the therapy helping?
I had scans done & in the end they thought it was a schwannoma of a cervical root, 1cm lateral c1 on right. Later another place said they saw major vasculature-distended/dilated vasculature on right and left side. (I had facial paralysis left & right a year apart. I presently have swelling of left eyelid, full body "twitches" for about 4 yrs, eye doc said injected palpabral...Had full facial paralysis twice and intermittent facial weakness. I am taking Restasis (eye drops/vile) Recent high bp 160/98 with T4 elevated same day, history of graves (with the suppressed tsh)-I am wondering if this palpabral swelling is a manifestation of sarcoid or hashimotos thyroid eye (the swelling has been happening on other side recently. My cxr was normal (1-1/2 yrs ago). Eye doc apt is in a couple of weeks-had the corneal topography. She said the swelling could be the sjogrens and could be thyroid-so suggested the thyroid check. I am nervous since this swelling has been with me since this march and the T4 came back high. I hope this isnít the thyroid eye disease. It looks like it is taking direction...Last few nights legs hurting-use ice packs, woke up 2 times-not sleeping...Oye-Vey
ie: cranial vasculitis...
Have they tested your ana? When I see a neurologist again I will be asking specifically about my scans and the reports and if the "dialated"/"distended" veins (intracranial vasculature) is a form of CNS vasculitis. I was too chicken to forward the report to the rheumy I had been seeing. I got up the gutz to ask the office people they told me to send report. Family history (both sides) is positive for vascular problems. Have been in the middle of neuro workup had insurance change and she was not participating! I was so upset and not about to have someone else just go in there and do an lp. Not sure what I need. Managed health care is useful if you have a good pcp.
Hi Riceneuroni...in answer to your questions...my neurologist is really into European clinical trials/results in regards to neuropathy. He is really impressed with the trials showing the major improvement in pain after initiating a program of ALA combined with one of the anti-epilepsy drugs (Keppra for me). I am currently taking 750mg of Keppra twice a day along with 300mg of ALA twice a day. As I said in my last note...my pain has been reduced at least 50% and my quality of sleep has improved drastically. Severe pain only seems to return if I spend too many hours on my feet during the day (in excess of 4 hours at a time) such as running errands, shopping, etc. I then tend to suffer more that night, but it usually returns to much better levels the next day. I'm going in for EMG and some other tests on Wednesday. Just figures...my feet are getting some improvement and I just find out my right renal artery is 70% blocked. They're just gonna watch it for now since I'm already taking Plavix and aspirin. I'll have another ultrasound done in 6 months and then they'll decide whether to stent it or not at that time unless bp gets out of control before then. Geez, it's a b.... to get older, but it's never boring! Hope everyone is feeling well enough to enjoy Labor Day! P.S. Almost forgot...no side effects to either Keppra or ALA after 5 weeks. Later...
[This message has been edited by CJW (edited 09-01-2003).]
09-01-2003, 02:10 PM
hi, it sure sounds like y'all are having a time of it. i am truly sorry for your pain and will pray for you all. i know that up until a month ago i was having severe neuropathy in my left leg(weird, huh). every night when i went to bed i would start with the tingling, then burning, then repeated muscle twitching/spasms of the same muscle groups: guadricep, calf, and the musculture of the lower foot up to my calf. i would have 5-10 repeated spasms, then it would stop. then in 2-3 mins it would repeat. this was not so much painful as extremely uncomfortable. i am bipolar so i fiqured it was a med reaction, but my phsychiatrist said no. went to g.p. and she said it was a med reaction and refused to give me a referral to a neurologist. then doing research on internet i did find a condition benign fasciculation disorder that was exactly what i was experiencing. and than it can be caused by meds, particulary one i take. i no longer take lithium at bedtime and stopped seroquel all together and have not had a problem since. this condition is caused by a variety of meds, multiple sclerosis, and als. but most likely it is a med you are taking. look this disorder on the internet to get a list of meds. it can affect any or almost all of your muscle groups. i hope this helps someone. i know how frustrating this is. take care and God bless, molissa :angel
09-02-2003, 03:54 PM
hi, i also have neuropathy on my legs. i have it due to 2 problems one was from some disc problem i had on my L-5 and S-1. which i had spinal fusion on it now. the pther reason is that i have been found to have diabetes also. they have controlled my neuropathy by giving me neurotin 600mg 3x's aday. i started w/ 300mg 3x's aday but it wouldn't help so they went up on the mg's. now i am happy to say that i feel much better.i don't get it as much as i used to now. b4 this med, i had it all day everyday 24-7.it was worst at nights. i couldn't sleep due to the stabbing and burning sensations i used to get. it was awful. i'm glad now i can sleep better and not feel the symptoms too much. i mean it is there but very slightly, i can barely feel them. i am going to have to be on the med for life now. but that is ok, cuz if i can feel better then i rather be on meds than not feel better. have any of u been on neuroton b4?
09-02-2003, 03:55 PM
hi, i also have neuropathy on my legs. i have it due to 2 problems one was from some disc problem i had on my L-5 and S-1. which i had spinal fusion on it now. the pther reason is that i have been found to have diabetes also. they have controlled my neuropathy by giving me neurotin 600mg 3x's aday. i started w/ 300mg 3x's aday but it wouldn't help so they went up on the mg's. now i am happy to say that i feel much better.i don't get it as much as i used to now. b4 this med, i had it all day everyday 24-7.it was worst at nights. i couldn't sleep due to the stabbing and burning sensations i used to get. it was awful. i'm glad now i can sleep better and not feel the symptoms too much. i mean it is there but very slightly, i can barely feel them. i am going to have to be on the med for life now. but that is ok, cuz if i can feel better then i rather be on meds than not feel better. have any of u been on neurotin b4?
09-07-2003, 07:53 AM
have you been injuried or fallen or anything like that? have you been exposed to harsh chemicals or glues at work? pn can also be caused severe vibrations on a continual basis - like running a jackhammer or a grinder. most people think it's only caused by medical, but it's not. my b lvels are good, i don't have diabetes or tyhroids. my started from work related injuries. good luck.
09-09-2003, 06:32 AM
You posted excitement on 8/5/03 about discovery that
low levels of nutrients could cause neuropathy...I
would presume that excessive levels could do the same?
You were seeing someone new. Any more news?
Does NIH have a site? Lark Lands have a site?
Magnesium has helped me with horrible night leg
and foot muscle cramps, and seems to sooth my
Now new scary symptoms. I guess neurogolist is next,
but I'd like to research nutrient thing first.
Bless you all for being there. I'm not nearly as
bad as some, no pain, just very recent numbness, all on left side, that is not explained by EKG, blood work or CTscan...all "normal". I'm assuming it will get worse, and as it get worse, the diagnosis will become more
obvious. Right now it's very scary.
Or maybe I'll get lucky and it will just disappear
as several other illnesses have done in the past
with no diagnosis, and no treatment. Let's face it,
sometimes, Docs just don't know! Sometimes we do
our research, and tell them things that give them
All my current woes seem to be echos of the past.
Memories of feeling this or that vaguely years and
years ago. Things that just went away. Feel like
they've just been lurking. My mother used to say
getting old is a full-time job. And somebody said it's
not for sissies. That's for sure! I guess I'm lucky
that this stuff waited til I retired to attack!
09-13-2003, 04:21 AM
Been away for a time but now established on high dose Prednisilone and the results are just about miraculous. No more pains, no more headaches, no painkillers - just bliss.
This seems to confirm the auto-immune mechanism (vasculitis).
In answer to one question, I have had just about any test, short of brain biopsy, you could imagine. They show that my immune system is triggered by something but no evidence of why.
One thing is certain - I wouldn't have got here without a lot of perseverence and the best Neurologist we could find. To the rest just stick in there.
I continue the steroids for 5 more weeks and then wean off to safer medication. If the symptoms come back then it's full blown chemo.
For the moment I have a (active) life again! Lets hope this puts an end to the problems.
Another answer - my wife died 10 years ago from a condition then called "Lethal Midline Granuloma". This has now been classified as a variant of Wegeners. It is the most terrible condition you can imagine, it destroys the centre of the face progressiveley until brain infection sets in. Fortunately it is very rare and developments over the last 10 years have caused dropping the "Lethal" prefix, nevertheless it is still progressive and terminal.
You can imagine my concern when told I have another autoimmune disorder!
Thanks to all for help and advice, I seem to be getting somewhere at last.
10-28-2003, 07:05 PM
If you have weird unidentified neuropathies/neurological symptoms, please read this:
I may have an insight that you never thought of...
I have had crazy neurological symptoms for years... buzzing in my arm and leg, facial numbness, bubbling feelings, shakiness and trembling-type feelings in one side of my body. I would often get severe pain in my lower left leg and foot.
For years they have bugged me and made my life unliveable, coming and going.
I recently came across a thing called an "acephalgic migraine", meaning a migraine without head pain (a-ceph-algia as the three roots). My doctor finally agreed with the possibility of this diagnosis. This means that people suffer the neurological symptoms of a migraine, BUT THEY DON'T GET THE HEADACHE PART. It seems bizarre, but some people get all the other horrible parts, but they don't actually feel the head pain, but otherwise feel miserable.
If you are stuck with weird symptoms like this, and neurologists are telling you that your symptoms are unfounded after tons of tests, look up acephalgic migraines. Try migraine medication next time you get these symptoms. They actually helped me out... it turns out that all these years I have been getting really bizarre migraines...!!
Also, to add to this, your doctor may seem to disagree with this possiblity of "atypical migraines" (you'll most likely get a "what, did you read that on the internet or something? Never heard of it..."---[most neurologists will never have heard of acephalgic migraines, so insist that they look it up].
Here is something you should do regardless of what neurological symptoms you have... get plenty of Vitamin B complex, and by that I mean take 200 mg of each B Vitamin component per day, at least. [It is very hard to overdo it at these levels because Vitamin B is water soluble and any unabsorbed excess just gets excreted]. Drink LOTS of water, at least 2 litres over the course of a day, and even more if you are a big person (water is essential in the manufacture of serotonin, and serotonin fluctuations are considered by most neurologists to be a major factor in the onset and control of migraines and neurological problems). Also get a decent amount of sunlight each day, which is also an essential factor for serotonin production. Finally, take lots of vitamin C, and get a sublingual B12 vitamin if you can... it is absorbed under the tongue and is absorbed more rapidly and efficiently than regular B12. And GET PLENTY OF SLEEP, as much as you can despite your neurological symptoms.
Please consider the migraine situation very seriously if you have not been diagnosed yet for your neurological symptoms. At least look into it... it sounds very implausible, but you may be surprised. Ask to test a sample of migraine medication next time you get an onset of these symptoms.
Good luck to everyone, and I hope your symptoms don't plague you too much.
10-28-2003, 08:10 PM
Gadzooks, a thread resurrected from the graveyard for Holloween. That's cool. Hi szonek. Welcome to the Boards.
Your info is good to have. Migraines can present in so many ways besides a headache.
I started looking into causes for needing supplemental B12 and discovered that if someone needs the supplement then it's because the body is not adequately absorbing it. It's important then to fix whatever is causing the malabsorption. There are, of course, numerous causes. The most common are gluten intolerance and bacterial overgrowth.
My neuropathy was so bad I was in a wheel chair for four months this year and eight last year. Three months ago I "corrected" my diet and now I'm med free, vitamin supplement free, practically pain free and definitely recovering. I wouldn't be surprised if there is a diet connection for various migraines too. Thanks for posting.