New and waiting
 

Diagnosed with PN in June still don't know the cause all blood work has come back normal no diabetes, thyroid problems MRI discovered 2 disc protrusion with annular tear, also moderate lumbar levoscoliosis. was sent to a Physiatrist who did nerve test and believe condition is because of AIPD. Pain started in the feet and progress within two days to upper chest, tried neurotin didn't help now taking tramadol, pain has subsided to the point i can walk without severe pain, still have tingling in feet and legs, shooting pain in right leg. Go back to the Dr. next week waiting to see whats next. I have been reading a lot here.

what is AIPD?

Sorry typed wrong it is AIDP (Acute Inflammatory Demyelinating Polyradiculoneuropathy)

Hang in!
 

:)I too have PN, and it is so annoying, hope you have a good doctor, Nuerontin and Lyrica will help and so will vitamins. I try to move around as much as I can. I walk some everyday. Take care and chin Up!

so you have a diagnosis of aidp because of the emg? have you had any blood tests for autoimmune markers?

ANA screen was done which I was told was normal

Aidp--
 

--is a more physican technical way of saying what most of us would know as Guillain-Barre syndrome. (The term would be more specific than Guillain Barre, specifically desinating the mot common variant and excluding some of the less common ones that are grouped under the syndrome.)

See:

http://www.jsmarcussen.com/gbs/uk/overview.htm

I am not aiming this at you directly, but I get frustrated when I hear people saying things like this. "Lyrica will help" "Neurontin will help" "Vitamins will help" I've been on all of those... I've tried all three of those.. I've tried Topamax. I've tried so many things and have not found any relief--in fact, the PN has gotten much much worse over time, even though my vitamin levels are all at normal levels now. Lyrica and Neurontin are not the answers for everybody--they do not work for everyone. They aren't magical cures... what works for one will not work for another... they sure haven't worked for me. =(

Again... this isn't meant to be aimed directly at you.. but I see a LOT of people saying that one specific medicine works best... when in reality, that's not true--it depends on the individual.

Thyroid?
 

What is your thyroid problem?
I have been taking levothyroxin for many years. My GP reduced my dose by 20% in Feb. whereupon I became very unwell including extreme fatique, leg muscle and feet pain, burning, pins and needles. I just went back to my Feb. dose 6 days ago and I am beginning to feel better. It can take weeks to months to repair the damage. I could have been dealing with Hypothyroid Neuropathy.
I would ask your doc for your TSH, T4 and T3 readings. A high TSH for someone with a thyroid would indicate hypothyroidism with the above symptoms among many others.

sarah mae
 

I have had PN for 11 years. The VA and i tried everything they had for 2 years.The only that would help me was MORPHINE. I took 240 mg. a day for 4 years to get my pain to 1-2. It slowly started back and i am now taking 60 mg.

Take anything to get pain relief.


George

Other than IVIG for specific cases, the current RX medications do not work to do anything for neuropathy other than suppress symptoms. They do not heal anything.

Here is a link with numbers and discussion about types of bariatric surgery and neuropathy outcomes.
http://docnews.diabetesjournals.org/content/2/1/9.full

I would suggest you get your B12 numbers and not rely upon "normal". Ranges in the US go down to 200 and at that level there can be significant nerve damage. If you were taking something at the time of the testing, the numbers reported may be high for that time only and not reflect other time periods. Going off the vitamins for a few days before testing, is what most people do.
A multivitamin with 200% RDA B12 is nothing (RDA for B12 is typically 4 micrograms so 200% RDA would be 16micrograms. Typical oral B12 is in the 30,000 % range because only a tiny amount ever gets absorbed. Not much if anything from 16micrograms would be absorbed orally)

I know you are frustrated and in pain. This just makes everything more difficult because stress increases cytokines (inflammation chemicals) in the body, which then affect blood circulation, and healing.

Have you tried soaking your feet in epsom salts? This can help and if you do it 2 or 3 times a day, by the end of a week you may see some change in your pain levels.

It takes a long time to heal when nerves are disturbed/damaged. My feet didn't return to a more normal level (absence of pain/numbness) until a YEAR into my thyroid fix. It took that long!

Also I don't recall your saying you have had mechanical evaluation of your feet Xrays, etc? ... Gout, and pseudogout, are possibilities, as are broken sesamoid bones in the ball of the foot, and neuromas. If there are color changes in the feet, and sweating, then RSD is a possibility too. One thing may lead to another unfortunately.. and all have to be considered.

I said before (not sure if it was in this post or not) that I am also taking a B12 supplement that is 2000mcgs a day (which is all my doctor wants me on) and get a B12 shot once a month. Between the daily B12, the multivitamin, and the shot--I should be getting enough.

Yes, I have had Xrays done, and they have looked fine. I have also had a sweat test done, etc.

I doubt I could handle epsom salt--I can't even stand to run plain water over my feet in the shower. I avoid getting my feet wet as much as I can.

I was taking Lyrica and just ran out of samples and my doctor's nurse forgot to send more so I had to just stop taking it abruptly.. we'll see how that goes to just go off without tapering off... the only thing left to try is Cymbalta.. after that they said they don't know what else to give me... so frustrating... basically it's the last resort and if that doesn't work... I'm in trouble.

Well Sarah people here can only relay their own experiences or things they have learned along the way. If something doesn fit YOU then its Up to YOU to figure out what does. As far as the vitamin thing ive seen it explained several times to you that for some of the vitamins what is considered normal by standards in the US is not what is considered normal in other places besides information which has come to light showing damage was being done to nerves at the lower end of what was considered normal reading for some vitamins. There is no miracle cure. If you are lucky and you do everything you can you MIGHT get better. there are no guarantess and you need to do some of the research work yourself to better understand what is being talked about.

I know one person who died from complications of the surgery and i know of a few others who have had it and none of them were ever informed of the need to supplement their diet because of the reduced absorption of nutrients due to the surgery. this is a great failing in my opinion. There are no miracle cures for PN and no treatments that dont have tradeoffs of one kind or another. The same goes for weight loss methods.

Hi, Lyrica and Neurontin don't work for me, either. But a doctor @ Johns Hopkins recommended I take Lexapro [an antidepressant] and this actually helps my nerve pain.

Kate

I think my doctor is going to try something like that for me... not that, but something else... He wanted to try Cymbalta, but I am on Amitriptyline and I guess they can't be taken together.. so he is trying to find a replacement for one of the two.... so we'll see tomorrow what he comes up with. Lyrica just wasn't working. It worked a few years ago for my back... but isn't working for my feet. I'm really glad to hear that the Lexapro is working for you. :)

Sarah, I am wondering if you have RSD... the severity of your pain response, is more like them. Also your feet and legs turning purple and swelling? Also a sign of RSD.

Here is a thread from the RSD forum showing pictures. Some are mild, some severe.
http://neurotalk.psychcentral.com/thread16167.html

A metabolic PN would be affecting your hands too I would think.

And your history of back problems and arthritis, are perhaps adding to your foot issues.

RSD can be hard to diagnose. So posting over there may get you more information about this disorder. RSD and PN can co-exist in the same patient.

I don't know. A family friend just asked me last night if I had RSD. She had read a story on Fox News about it, and wanted to know if that is that I had had. I told her that I had PN, but that I'd talk to my neurologist about it and see what he thought. I researched RSD last night and it doesn't sound like what I have. I relate to some of the symptoms, but not a lot of them. I did look at those pictures on the thread, though, and it is very different. My legs no longer turn red--they turn dark purple.
I don't have any problems in my hands... just in my feet.
I am still going to ask my neurologist, just in case. The website that I was reading last night listed some tests that are done to check for RSD and a few of them are tests I have already had for PN, so I would think that they would have caught it if I do indeed have RSD.I don't thnk I have enough of the symptoms fo have it.