[sbvcrn]

I am an occasional "writer", mainly lurker. I have numbness, burning, tingling, feet, legs and arms. All tests normal including skin biopsy. Now having pretty
severe leg pains. Constant ache (3-4 scale) and then sharp shooting pains both legs. I am having trouble walking even short distances particularly if on concrete. I know many of you have feet and walking problems. Anybody here with similar leg pain. Hurts day and night and doesnt matter what position I am in...even laying down. I wonder if possibly spinal problems could cause upper and lower extremity problems since all my other tests normal. I am seeing an orthopedic doctor today to discuss my pain. I wish I had something positive (no matter now bad it was). It is the uncertainty of what is going on and the look on faces when you have pain but "nothing to show for it". Thanks for any responses.

[MelodyL]

Hi there.

I'm sorry that you are going through all of this. What are you taking for your pain?

Did your doctor prescribe anything for you?


Also, what other tests have they done on you?. Any spinal taps? People here on this forum will need some more information from you, and then you'll get all sorts of help.

Take care.

Melody

[daniella]

Are you under the care of a neuro? If not I would find one in your area or maybe your orthopedic can refer you to one. I know since my issue though a little different then what you are stating is in my legs that did mris of my brain and spine. Have you had that done and what about emg? Have you had a complete bloodwork done checking for deficiencies and auto immune? May I ask if you have any other health conditions,age,when this started? Hang in there and trust me I have seen that blank face many of times from doctors. Frustrating and scary but really this forum has really helped me face my fears and feelings

[mrsD]

Things to be sure to check are:

1) intermittent claudication-- this is where the circulation to the feet and legs become impaired. It is more common in smokers, males who smoke, or the elderly.

2) check for foot issues... the sesamoid bones can generate alot of pain if broken or dislodged. The increased concrete walking pain, suggests this to me.
This usually does not make the legs hurt, unless you are walking in a way to strain the hips.

Sometimes it is really elusive to find the causes of pain. Most of us can understand your frustration very well.

[sbvcrn]

Thank you all for your responses. As I mentioned I have had about every test you can have. I see a neuro, had a negative skin biopsy, emg, ncv,
B12, auto immune, Vit D, GTT, brain MRI, test for claudication, etc...pretty much many of Liz Janes...just in case I missed mentioning many. I do take neurontin 1200-1500/day which I think helps the burning but now I have the leg pain. In the past I had hip bursitis and steroid injections helped but never pain down both legs. MRI tomorrow for lumbar spine. Ortho doc thinks there may be some problems here. Why? Who knows. Just one more thing to add to my plate. But still wondering, besides the painful feet, do any of you have the leg pains. Maybe I really dont have peripheral neuropathy and the burning is caused by something else and maybe time will tell. The pain is something new. Did have tests for paraneoplastic syndrome and all of those okay too. Will ask about the foot bones but really feet only burn...dont really hurt...it's the hips down to the ankles. Thanks again.

[MelodyL]

Originally Posted by sbvcrn

Thank you all for your responses. As I mentioned I have had about every test you can have. I see a neuro, had a negative skin biopsy, emg, ncv,
B12, auto immune, Vit D, GTT, brain MRI, test for claudication, etc...pretty much many of Liz Janes...just in case I missed mentioning many. I do take neurontin 1200-1500/day which I think helps the burning but now I have the leg pain. In the past I had hip bursitis and steroid injections helped but never pain down both legs. MRI tomorrow for lumbar spine. Ortho doc thinks there may be some problems here. Why? Who knows. Just one more thing to add to my plate. But still wondering, besides the painful feet, do any of you have the leg pains. Maybe I really dont have peripheral neuropathy and the burning is caused by something else and maybe time will tell. The pain is something new. Did have tests for paraneoplastic syndrome and all of those okay too. Will ask about the foot bones but really feet only burn...dont really hurt...it's the hips down to the ankles. Thanks again.

Do you know your exact B-12 level?

It's a good question, believe me (when all else comes in as negative), it's good to know your B-12 level, because people with neuropathy need MORE Methyl B-12 (it's a good form for us to take), and it really does help with the burning.

I've been on a high dose for over 2 years.

So if you can find out the exact number of your B-12 level, post it here.

Melody

[sbvcrn]

Originally Posted by MelodyL

Do you know your exact B-12 level?

It's a good question, believe me (when all else comes in as negative), it's good to know your B-12 level, because people with neuropathy need MORE Methyl B-12 (it's a good form for us to take), and it really does help with the burning.

I've been on a high dose for over 2 years.

So if you can find out the exact number of your B-12 level, post it here.

Melody

Hi Melody...the B12 was 684, also had the methy...something B12 test and it was excellent too...dont have that result right off the bat. The only thing different in my life the last year or so is the neurontin but it is supposed to help...so there you go (ps...also take all the recommended supplements but cant find any information on them causing anything either, only helping)
My legs just ache so. Ironically it seems like the burning and tingling is better but only to be replaced now with the leg pains and aches. Cant figure that one out either. Had the MRI and also lumbar spine xrays but wont know about those until next week. Probably be fine as has everything else.
Maybe it is fibromyalgia. I dont care what it is if I can get some help. Last night I had so much leg pain hard to sleep. Hurting right now. I plan my life around how much walking I may need to do. And to think I used to be soooo active with my husband, kids, gardening, dogs, horses, etc. Thanks all for your information and somebody to "talk" to...even if what I have isnt peripheral neuropathy but that still seems to make the most sense even though everything is "normal".