Greetings...my name is Mark (46 yo male), and I am new to this wonderful disease/disorder/syndrome! At any rate, I had been hit by a car last october. Developed a blood clot (left leg)as a result, and put on Coumadin. Two weeks after coumadin therapy, I was awakened by a burning in my left leg (same as where clot was). Well, I was then checked for every circulation disorder known to mankind, since post thrombotic pain looks like neuropathy. However, everything was wonderful there.

So sent to neuroligist, who does another series of tests. All negative, but prescribes Lyrica. It does nothing. Burning pain, (with minor to intermediate joint joint pains), progress to my arms and sometimes head and back. I began to invite relatives over so that we could roast bacon on my extremeties for breakfast. Was taken off Lyrica, and put on Gabapentin. Went up to 1800mg, still nothing. I am a big guy, so they said I could take much more. I have a huge tolerance for these drugs, so all the side effects folks say they experience, are nil for me. I am thinking it is prescriptive **** dust. So all esoteric blood work comes back ok. I then speak to my Neuroligist, and he is at a loss. EMG, and all neurological tests are normal. Pain is primarily burning type....lots of yuks and giggles. However, the weird part is, when I stand, I dont burn, and when I go to sleep I dont burn either. If I am just sitting however....ooh boy, it is a humdinger! But if my arm is exposed outside of the blanket, it hurts pretty bad. So temperature piece is there. This first neurolgist comes up with 5 (count em folks, 5 differential diagnosis):

1. Post Thrombotic Syndrome
2. Sympathetic Mediated Pain
3. Brachial Plexopathy
4. Generalized Neuropathy
5. Saphenous Neuropathy (nerve behind knee)

After my appearance on the red carpet in Hollywood, I did not win any of the above. I was however offered a guest appearance on the show House, since they can't figure this freaking thing out. My request to be put into a Ketamine coma was also denied, which my wife was happy about, since I provide a valuable frying service during family functions.

So since I live in NY, and have the patience of a gnat, I find out who the best guy is to treat this. I get an appointment with Dr. Norman Latov, the King of Periphereal Neuropathy. Very smart man, big brain. I go through the examination and he is using tuning forks...tells me I have a minor neuropathy (if what I am feeling is minor, I will wear a dress to work). Without me describing my symptoms, he describes them. The man did not take my insurance, but luckily I am well resourced. I would give him a car if he could treat this.

So is this story over? Nah, he sends me for a myriad of more blood tests. Including retests of the panel. And some new ones added on. In the meantime, he tells me to ratchet up to 3600 mg of Gabapentin. I reach that dose on November 12th. From what I understand they want to try that for 6 - 8 weeks before trying something else. Dr. Latov said they could add Cymbalta or Elavil to that. I immediately asked for Heroin, and he said that was a no go. Gabapentin did slow down my processing speed a bit, but hey, so does single malt scotch. He also is sending me for a skin biopsy in January. He said if that does not proove conclusive, they would look for other neuroligical items. He said they find the cause of PN roughly 60% oif the time, and the skin biopsy is very useful for small fiber neuropathy, and its treatment. I then get a call that my B6 is low, and he starts me on that about a week ago. No other vitamins, just B6. Told me to maintain the 3600mg of Gabapentin (I would be much happier if it were Gabagool, like Tony Soprano) and see what happens with the B6.

So now you know my story...any thoughts re the above!? Have a great holiday,

Mark

3. Brachial Plexopathy

We have a Thoracic Outlet Syndrome forum {TOS} also called Brachial Plexopathy, thoracic inlet syndrome etc.
involves the neck/shoulder area and the nerves, muscles and/or blood flow thru them.
TOS forum - http://neurotalk.psychcentral.com/forum24.html

the burning and skin sensitivity??
Has RSD/ CRPS been mentioned at all?
RSD forum - http://neurotalk.psychcentral.com/forum21.html

do you have swelling and skin color changes?

Be sure to check the useful stickys on both forums they contain the most condensed info links and such.

to be low in B6. Especially a male. Do you eat meat?
Meat has B6 in it. Bananas are also a prime source.

Who gets low in B6? Some drugs deplete it.
INH (not commonly used except for TB)
diuretics (for blood pressure, to reduce edema)
and many antibiotics (taken long term).

Anything there look familiar to you?

What else? Well, people with a disorder of heme production called pyroluria, get very low in B6. Along with B6 loss is also zinc. This is a benign condition but it does deplete these two nutrients, sometimes severely. It is diagnosed by urine test.
You can read more about it here:
http://www.drkaslow.com/html/pyroluria.html

Did Dr. Latov do a B12 on you? Do you know the number? I'd get that and post it here. Also have him run a Vit D test on you. Many people are found very low in Vit D these days. There is a huge movement to identify these people to prevent disease:
you can read more here:
http://www.vitamindcouncil.org/

Be sure to check your B12 levels, and be advised that Dr. Latov's new book has TWO pages of errors in it about B12.
While he does use some nutritional supplements, he did not proof read his own book, (or write it correctly).

And since you are having a problem with B6, I'd suggest you use the activated form of it...called P-5-P. This works better than regular B6 which requires activation in the liver by pyridoxal kinase.
This is one brand, but there are others, example by NOW company. You only need one a day of these.
http://www.vitaminshoppe.com/store/e...jsp?id=SL-2074
Some local stores may have this, but it should be available online. www.iherb.com has a selection as well.

Thanks....RSD and CRPS was r/o. no skin changes or swelling.

This is great information. Thank you very much. I was reading the numb toes aching soles book...anyway, this company biomed came up with a formulation from his book. They also have neuragen which looks interesting. Anyway, here is the information and the links. The Neuro Essentials has L Carnitine, Lipoic Acid, B Vitamins. I will do this after the skin biopsy. I am always scared that I do not want to make matters worse.





Any thoughts on this product They also make a topical oil called neuragen. Who the heck knows????? Origin BioMed makes the product:

a full B50 mg complex with added B1 (thiamine)- 250 mg total - and additional biotin- 5 mg- as well as 1000 mcg of B12 in the preferred bioavailable methyl cobalamin form
400 mcg of folate (folic acid) (to help improve cognitive function)
1000 mg of N-acetyl L-carnitine (a powerful amino acid to protect neuron cells from aging)
600 mg of alpha lipoic acid (a double acting antioxidant)
1000 mg of vitamin C with bioflavonoids (another excellent antioxidant)
200 mg of grape seed extract (perhaps the best antioxidant of them all)
a full complement of the most helpful neuroprotective minerals, including calcium (100 mg), chromium (400 mcg), magnesium (200 mg), and zinc (50mg)

I am a bit confused. The copy from this website does NOT match the list of ingredients for 3 tablets a serving: So are you using 6 of them a day? Look closely.
The website is very confusing IMO.

http://originbiomed.com/usa-en/neurohelp.html

Also, If this indeed does have high dose methyl B12, it needs to be taken on an empty stomach.
The price is not too bad considering if all of that is in there.

We have a thread here on Neuragen:
http://neurotalk.psychcentral.com/sh...light=Neuragen
IMO Neuragen is way overpriced for what is offered, however.

I still think you need the Vit D testing. And a search for why you are low in B6. Your answers to these questions are
not inclusive of the product you have posted.

hey welcome,
I am undx but have many neuro sxs...
one is painful numbness/tingling badly..the tingling pain does go away with me on neurontin!! Hoping the higher dosage helps your body!

again welcome, and hugssss, good luck,sarah

First of all, I LOVE YOU!! You made me laugh out loud more than once.

But what really got me was the HOUSE, and the Ketamine Coma. I have never missed an episode.

You have a wonderful sense of humor.

Listen to Mrs. D and do what she suggests.

I always have and if it were not for me being on 5000 of Methyl B-12 ( I take it first thing in the morning on an empty stomach) It dissoves under my tongue.

It removed 95 percent of my neuropathy symtoms. The only times my feet burn is when the weather goes nuts outside. And it's very tolerable. The other 95 %, well I'm just dandy.

I have diabetic neuropathy by the way.

you say you live in NYC.

Are you aware that we have the neuropathy support group that meets once a month? Maybe you've come to one of our meetings?

They are really lovely and we get great info. We have LIVELY discussions, believe me.

Everybody there has neuropathy from various causes.

so take care, and take Methyl B-12.

It can't hurt.

Melody

Just wanted to say welcome!! Hope you can find some answers to your questions. Hope you feel better soon!

Yes...the manufacturer stated that one would need to take 6 tablets a day. That being said, would I need to add additional B12 on my own? That would get me to the 5000 number?

Thanks,

mark