Tingling, Burning Pain, No Answers,Help Please!!!

[TRW]

I'm a 32 yr old female with no known medical conditions.About 7 weeks ago I experience numbness/tingling in my left hand.After 1 week I went to my PCP and he did the traditional neuro exam which was normal, CBC, Magnesium Panel which were normal as well but did diagnose me with high blood pressure and put me on meds- gave me a referral to a Neurologist.I went to the Neuro(Private Practice)he did the same Neuro exam,scheduled an MRI.In the meantime, I started feeling worse the tingling feeling had progressed to my legs feet went to the ER had a EKG which was abnormal BUT the doc said that it was nothing to worry about,CT which was normal -sent me home to f/u with neuro.The next day I started having this intense burning sensation in my r foot which has spread to both feet and legs, especially calves, hands and I feel this irritating sensation (like something is crawling on me) all over my body as well.The brain MRI w/o contrast came back normal.I had a f/u with the Neurologist who made me feel like a NUT(I have an appt in DEC@ Duke Univ Neuro).He said well the brain mri is normal, you don't have a tumor-MS-bascially you're not going to die get-next in line. (he didn't even examine me the second time-just went over the mri pics) I said what about the persistant burning sensation then he says well I have seen people with your symptoms before and they usually go away w/i a couple of weeks, he wrote a script for Neurotin 100 mg tid (which I am not taking)and gave me an appt for Dec. Last night I started having a burning sensation in my head.I'm going to die before a dignosis-help

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

The burning sensations may be a peripheral neuropathy which is a primary problem of the nerves coming from the spinal cord and is best evaluated with an EMG rather than MRI. Electrolyte abnormalities, thyroid dysfunction and vitamin deficiencies such as B12 can all cause similar symptoms. The possible causes of a peripheral neuropathy are endless. Rheumatological disorders as well as a spinal cord problem are also possible considerations. A normal MRI and neurological exam should be somewhat reassuring that you're not dealing with something imminently life threatening. The Duke second opinion is a good idea. In the meantime, consider trying the neurontin as it has helped many people with nerve type pain and it doesn't have any serious side effects except sedation. GOod luck.

[Mr.Sick]

Hi TRW,

I am feeling more or less similar problem as you are, may worst sometime. What I am feeling is tingling on one side of face, sometimes numbness. Tingling in same side of fingers. Sharp pain anywhere(sometimes), bugs crawling pricking. Sharp pain in ears, burning pain on head, stiff and painful neck and lower back. Twitching muscles all over the body. My Neuro has not found any thing. Initially, he said may be I have migrain, then he mentioned neoro-chemical imbalance(due to lower B12), and now nothing. I'm taking Neurontin400 3/day  without much improvment. Neuro did MRI,MRA,EEG all negative.
Oh, I forgot to mention that I even get pain in head when I got to sleep. Sometime pain starts when I sleep on either right or left side or on back. Sometimes, it is hard find proper posture and end up sleeping in sofa.
My PCP sent me to Rhumetologist to determine for sharp pain of joint and muscles. He is still investigating. Yes this is very painful and frustating. I cried many nights and still getting up because of pain in head. Sometime I can't go to work if I could not get sleep. I have had a feeling that I am dieing, but I have to stay away from that thougth. If you share any of your treatments that helps or if any one else has any suggestion please send me an email at ***@****. Thanks. SRG.

[Numb Feet]

I really feel your pain.  However, not as much pain as you. I think if I was feeling the numbness in my head I would have killed someone by now. I only have Numb feet.  Its been going on now for about 3 weeks.  I have been to 2 ERS, all kinds of blood taken and of course no-one knows what is wrong with me. I haven't been to any specialists but after reading your posting I'm kind of glad.  Heres my story....I'm a 38 year old Female alcoholic.  I stopped drinking 6 months ago.  I was taking the drug called Antabuse and I believe from reading that this drug has depleted my vitamin B12 so I am self treating and taking doses of B12.  I've been taking it for a couple of days and at times I think its helping because I start feeling more of a prickliness, like they are coming alive but always wake up in the middle of the nite still with numb feet, it is difficult to walk, its so frigin aggrivating and its causing me to be extremely depressed.

[justy]

Have you had an MRI of the brain to rule out Chiari Malformation?

[mamafigure]

I know what you are going through and it isn't fun.  I have symptoms similar to yours with the addition of tremors on the right side, and a gait problem.  This has been going on for about 6 months. This week my neuro just told me that it was in my head this week because the tests were all pretty normal.  

I was thinking about Duke, too.

Good luck.
mamafigure

[graham]

Hi to all, I brought this subject up in a question below posted by mamafigure, and at the risk of getting on people's nerves here I go again.

TRW, vitamin b12 deficiency is a serious condition which can cause many of the symptoms mentioned in your post, as indicated by the neuro who replied to you. It is also, unfortunately, very badly understood, even by some doctors.

In the blood test that were carried out, did they check your serum b12 level and what was it ?
If they have not checked it I would ask for it to be checked immediately. If it has, I would ask them what the actual result was, don't just accept that it was "okey", find out what the actual figure was.

Some doctors think anything over 200 pg/ml is okey, others think damage can be caused at at far higher levels, in fact in Japan they have a normal level which starts at 500pg/ml. I'm not saying who is right, just that there is great debate within medical circles.

Mr. sick, you say that your neuro mentioned a neuro chemical imbalance,due to lower b12, and now nothing. Why did he bring this up, was your level at the low/normal level. Again I would want to find out from my records what my b12 level actually was.

Numb feet, I'm glad you have done some research and found out that the drug you were taking is thought to lower b12 levels. Did you also know that alcoholism, as you say you have this problem, also has the same effect of lowering your b12 level. Did you have this checked, and again as above, I would ask what your level was.

Mamafigure, I added a additional post to you after your reply to spring below.

I wish you all good luck
Graham

[1kath]

I have a copy of my last blood work up.  How would a deficiency of B12 read.  I am not sure what to look for.    What is a normal Range.

[graham]

Kath, your test should show what the lab has set as the "normal" level. It may say such as, normal in this lab is 200pg/ml - 900pg/ml, or slightly different, and would then show what your level was.

If it is at the lower end of normal, say for instance 250pg/ml I have read comments of many people, both within and outside of the medical profession, who would feel that there could well be a problem. If it were low, or low/normal, there are other tests which can be done to try and identify if that is where the problem lies.

Good luck and I hope this is helpful.
Graham

[1kath]

I do not see anything on the report that says B12.  The only thing that reads low is co2.  The only thing that shows high is the Anion Gap. Thanks for your help.

[graham]

Kath, co2 is one of the electrolytes and reflects the acid state in your blood. The anion gap is a calculation based on the other electrolyte readings ( such as potassium and sodium chloride).

If you had your b12 tested I would think it would say b12, but check in case it mentions cobalamin, which is b12.

If it is not there at all and your symptoms are like the others on this thread, then I would ask for it to be checked.

Best of luck
Graham

PS If you want a site that explains how to look at your blood tests you might check www.amarillomed.com/howto.htm

[Mr.Sick]

Thanks to all,

Justy, No I did not have MRI to rule out CHIARI MALFORMATION. I can talk to neuro about this in my next visit. Heavyness in head appears to be during sleep at this time. Muscles twitching and bugs crawling goes on during day time.

Graham, My B12 level was somewhere between 300 and 350. Do not remember exact number. I do not know what it was prior to this problem. I will check with primary to see if he has any information about it. Rheumetologist has priscribed (prescribed) me VIOXX-25mg for two weeks for joint and muscles cramp and pain. It has been a week and not seen any improvement. Did some blood work for his investiagtion. I will find out that in next visit that is two weeks away. Meanwhile, pain goes on.
Mr.Sick.

[Fishing Widow]

My husband (57 years old) has just been diagnosed with idiopathic peripheral neuropathy.  He had a massive number of blood tests done and a CATSCAN of his lower back.  MRI is out because he has a pacemaker.  The neurologist said no cause could be found.  I do find it interesting about the B12 comments.  His was 350 and the neuro didn't think that was anything since it was in the normal range.  I don't like accepting the problem and only wanting to deal with the pain.  I'm worried about the progression.  It is alreay up to the knee.  Neuroton, 300 mg. once at noon and two at bedtime, is not giving him relief but leaves him extremely sleepy and dangerous to drive and work.  Looking for information from other patients or spouses.  Thanks.

[graham]

The answer I gave at C6 above shows how their is a great deal of differing opinions on safe levels of b12.

I don't know if it could be the answer for your hubby, but if it is a while sice it was tested, it would not do any harm repeating it to see if there is any downward change in the level. If there is, other tests which are more specific, methylmalonic acid and homocysteine, should be tested.

Is his general health good, is it just peripheral neuropathy symptoms in his lower legs ??

I'm like you, I don't like things left unanswered.

Good luck
Graham

[Fishing Widow]

The tests are current.  Blood drawn 3 weeks ago and results just in.  Other than heart problems, he's in good health.  He passed all the cardiovascular tests with flying colors.  It's definitely not a lack of blood flow.  He's not diabetic.  He just has this tremendous burning in his legs from below the knees to the toes.  The right leg is slightly worse than the left.  It began nearly a year ago.  His family physician said stay off salt, even though he had no fluid retention.  Then the cardiologist ran the Venous Doppler test and others and passed his legs as being fit.  Now he's seeing the neurologist and not getting any answers, just prescriptions for pain killers.  He's in home repair business and I hate for him to be so drowsy and climbing ladders and such.  Thanks for the support.

[graham]

I have a fair understanding of b12 deficiency and would think it worthwhile getting the methylmalonic acid and homocysteine tests done, if for no other reason than no explanation has been given for the your husband's symptoms. I have seen opinion that neurological problems could be caused at this level.

However, there are people who have great knowledge on his particular topic if you wish to ask for further advice.

Go to braintalk.org and click on specific neurological conditions M-Z and enter the Peripheral Neuropathy forum. Direct any question on b12 deficiency to Rose, who has real expertise in this field, and you will be given good advice.

Best of luck and let us know how you get on.
Graham.

[great]

I am in a similar situation. I am having widespread muscle twitching and tingling all over. I had a prolonged seizure reaction to Skelaxin in June. I had never had a seizure before. I have had 2 cervical MRI's, an EMG, and B-12 test, all of which turned out normal. I had a brain MRI yesterday. I should get the results by the middle of next week.

Any comments? ideas?

great

[soccerboy]

Hi

I'm a relatively healthy/semi-active 31 yr old male. Had hyperparathyroid surgery in July 02. Since then I have been hypocalcemic. This has caused daily numbness and tingling in lips, hands and feet (also Chovstik's sign daily).  I am on a regiment of Tums and Caltrate to offset the low blood calcium.
Of course this has been causing constipation (a fun cycle!).
Most recently even following calcium replacement, I have had consistent numbness, burning, pain and tingling in my feet. I was playing soccer this week and both feet went numb and felt like pins and needles.  Then the following day I had a moment of almost fainting and ended up in the ER.  All blood tests show things are normal, even calcium levels and sugars.  I am not diabetic, my EKG is normal and I have no other symptoms.  I notice that the only thing that has been resolving the sensation in my feet is sleep.  A PTH level is pending, but even the surgeon does not think it is clinical hypoparathyroidism since my phosphate levels are fine. I have an upcoming appointment with Endocrine to try and sort this all out, but I am wondering if anyone out there has any ideas for me.  I obviously would like to rule out neuro as a concern.  I have just been following the vein of the calcium thing.  It just doesn't seem to make sense though and some of the other topics I've read here could lead me to a solution. Thanks -