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Old 05-05-2003, 10:55 AM   #1
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Post No reason for neuropathy

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?

 
Old 05-06-2003, 01:33 PM   #2
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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.

 
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Old 05-06-2003, 05:01 PM   #3
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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.

Debbie

 
Old 05-30-2003, 08:03 PM   #4
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Talking

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

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Old 06-26-2003, 08:15 PM   #5
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I will try a chiropractor
thanks James

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Old 07-25-2003, 08:53 PM   #6
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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.

------------------
Peace,
Susan
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Peace,
Susan

 
Old 07-27-2003, 05:12 AM   #7
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Hi Everybody,

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).]

 
Old 07-29-2003, 06:42 AM   #8
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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.

 
Old 07-30-2003, 03:48 AM   #9
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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)))

 
Old 07-31-2003, 05:04 PM   #10
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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.

Celia

 
Old 08-01-2003, 03:38 AM   #11
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Celia,

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.

CJW,

Have you had any relief? What amount of ALA are you taking?

Debbie,

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).]

 
Old 08-01-2003, 08:00 PM   #12
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riceneuroni,
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?

Celia

 
Old 08-04-2003, 01:49 AM   #13
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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).]

 
Old 08-04-2003, 06:14 AM   #14
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Hi,
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

 
Old 08-05-2003, 06:07 PM   #15
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Hi Everybody,

Banjoboy,

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).]

 
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