Greetings...Sensory Neuropathy, Skin Biopsy, Gabapentin party
 

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.

it is not common
 

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)

Well...
 

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!:hug:

http://i275.photobucket.com/albums/j...lcome/welc.gif

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

No, 1mg is enough for most people to see improvements.
But you need to know your B12 levels...to predict that.
If you were really low, say below 200 the 5mg would be better.

Make sure you take on an empty stomach.

Also one down side to a shot gun approach like this is that you will not know which ingredient is really helping you.

I personally would start with B12 separately and take one P-5-P (activated B6) daily. See what happens.

But you do what you want.

For the money you are paying, you could ask Dr. Latov for Metanx.

People who end up here are more likely to have metabolic failures with some nutrients.
So activated B6 would be a better investment for you. Metanx has methylfolate, methylB12 and activated pyridoxine in it. All 3 activated. It requires a doctor's RX because of the high folate.

MrsD....I have not gotten my numbers from Latov in terms of levels. He is waiting for the results of the skin biopsy. Not a talkative guy...at any rate, I had had a panel done September, and my Vitamin B12 Serum was 592. And my B6 at the time was high at 28...three months later it is low?!?! I have been dieting (I need to lose 100 lbs, which I am sure will help the pain when I get there). My D levels were as follows:

Vitamin D, 1.25 Dihydroxy = 29 Range is 19 to 67
Vitamin D, 25-Oh, Total = 16 inidcated low 20 -100 is normal

Thanks and have a great 2009!!!
Dtiamin D 25-OH, D3 = 16
Vitamin D, 25-Oh, D2 <4


Vitamin E was right on target.

I am sorry I did not pay more attention in Chemistry class.

I am not even sure that this is all neuropathy, given that my pain DOES NOT get worse at night, and I sleep fine, and have no pain. Also, standing no pain. Wonder if real microcirculation issues are at hand. The pain is so annoying and that is why I was looking at the Neuro Essentials since the Lipoic Acid and Carnithine have proven helpful in some studies.

The other thing is an herb called horse chestnut which improves circulation. Who the heck knows!?

Hi.

Gotta get those B-12 levels up. My number is 2000.

Keep taking the Methyl b-12.

We don't want to put you in a Ketamine coma.

Melody

If you need to lose alot of weight, you are most likely insulin resistant. I'd get a fasting insulin run to see if it is elevated.
If you are--then you are pre-diabetic...and need to adjust your diet. Follow the Zone, or any diet on the net that is for metabolic syndrome/Syndrome X.

You will need some Vit D supplementation. I'd consult that website I gave you earlier. You will need at least 4000IU daily of D3. Maybe more. Upper safe limit today is 10,000 IU D3. (new data)

For the burning, you can try Biofreeze rub. This sometimes works. It is very high in menthol, and has ilex in it which is an antioxidant.
Also you might investigate Lidoderm patches.
Try 1/2 patch behind the knee on that side, and also on your back following nerve distribution to your arm and leg.
These work quite well, when placed over the nerves that go to the spinal cord. I think they work better than oral meds for some people.

Yeah I have not even started B12....will do that and get the P5P B6 today. I am not patient, but I understand that it takes a couple of months to see benefits.

I thought I might be pregnant, and that was causing these symptoms. Then I realized I am a guy....

The funny thing is, I, probably like everyone else likes quick solutions...so I actually did suggest the ketamine thing to my first neurologist. I did this after I saw the trial and error of these various drugs to get the right cocktail. He was not amused. I certainly was. I have worked on Wall STreet 20+ years, as a senior technologist. If I gave my boss the same lines of horse*&(^ that these doctors do, I would have had to wear an athletic protector.

Enjoy 2009,

Mark

I have been thinking about this detail. If you are wearing tight clothing, tight belts, and sitting on your wallet on that side, this might be an entrapment issue.
Did you have injections on that side when you had the clot?
Did you have any dyes injected?
Some people react to dyes.

If you had a dye injected to visualize the clot, I'd look at antioxidant therapy. A good one today is curcumin which is showing in studies that it reduces endothelial inflammation (lining of blood vessels).
This product has good absorption values:
Curcu-gel:
http://www.epic4health.com/cuul500mgena.html
There are others: quercetin, grape seed extract and resveratrol all show promise.

1) you should take up writing short stories....like mel, i laughed several times
2) where are the imaging studies of your back? please, dont tell me you were hit by a car and no imaging of your back was done????
3) check out a neurochiro...melody knows one in NYC

follow up
 

All of you are very kind. The humour (spelling it the British way, since I just finished reading a Dickens novel), is a way to express my anger without making folks scared. I am 6' 300 pounds, quick witted (wait my wife would say dumb witted), and it intimidates folks.

I had an MRI with, without contrast...that was in August...NADA...but perhaps should do another. My contrast MRI had the neurologist freaked since he saw what he thought was another clot in my groin. Turns out that that was a vestige of my first, but they did not figure that out until I did a CAT. The MRI...I just hate that freaking tube!! I am a BIG guy...so think about John Holmes dating Olga Korbut ( I like the retro stuff, what can I say), and you get the idea. I can do open MRI, but everyone tells me it is not as accurate.

I have thought about the compression stuff quite a bit, as I search through the net trying for self diagnosis. My weight certainly can add to that. At the beginning of all this, I thought I had ALS. I setup microphones in my house, so that everything sounded like Gehrig's today I consider myself the luckiest man alive speech. That is a terrifying disorder, and my heart really goes out to all who have it. Their families as well.

But re compression etc....it would be odd for my arms and hands, and sometimes head to get burning with compression, no? Unless I have some sort of cerebral lesion. I have had absoutely NO loss of strength however, and all other neurological tests intact. So that was ruled out. That is why I keep thinking microcirculation.

I also had Japanese Accupuncture and medical message (no happy ending) done. All to no avail.

But funny you should mention neurochiro. I live in Westchester county, and one was recommended to me in Yorktown. His name is John Foley. Mel, don't know if you ever heard of him....I am just scared of these guys making things worse with their manipulation.


Re Mrs. D....no Dyes...just ultrasound then ABI tests extensively. Dopplers for reflux etc when they thought it could be post thrombotic. They gave me a compression stocking. So, I start getting ****** at that, and go to Dr. Jeff Olin, the King of Vascular diseases. Besides telling me he admires my glass (do you think he wanted a date?), he tells me I dont even need that. Then he tells me I am fat. Gee, you think? They teach you that in medical school tough guy? I have two Master's degrees, am an IT exec on the Street, and he tells me I am fat. I can hardly wait to get one of those new inventions...er what do you call them, a mirror?


Thanks to everyone for their help,

Mark

oh. the groin....
 

Lovely.

I had a groin injury 3 yrs ago from a fall. The most painful thing ever! I don't have burning, but when it was fresh, I couldn't move that leg at all...or do anything like walk, or anything more than walking.

Compression in the arm? From your shirt/tie I would think.
Although the tieless look is in right now.

I don't know what your attire is on Wall Street IT...my son works for a small software company and it is T-shirts and jeans.

When I had my son (27yrs ago) I had IVs in my arms with drug Aldomet...this caused terrible vein pain and inflammation.
It was awful...that is why I thought of injected dyes.
Did you get that contrast injected in the arm that is bothering you now?

There is a warning out for one dye that is used in MRIs...
http://ms.about.com/od/multiplescler...linium_nsf.htm
The fact that you are in pain only when sitting is diagnostic of something. Compression on something.

Since you have funds, I'd get tested for homocysteine levels, and C-reactive protein. The 3 vits in Metanx will help with homocysteine, which inflames blood vessels when it is elevated. The C-reactive protein shows inflammation which if you have in your blood vessels, may show that way.

I'm with Mel! You made me laugh...more than once. Please, don't lose your sense of humor. You're going to need it in the days to come. :D

Have you found anything that alleviates your symptoms? The coma sounds...restful. Sigh. I'm on the same time as you are so here it is 3:00 AM and guess where I'm *not*?

The Mirapex and other half of Tramadol are finally kicking in so I may be able to go back to bed in a few minutes.

Oh and BTW, alcohol can aggravate PN symptoms. Bummer, eh? Course if one drinks enough one won't care. :wink:

Like my boy says, "Daddy drinks because he has to."

Nothing yet in terms of relieving symptoms...I have been more mellow lately, maybe the gaba, maybe the resignation. Scalp is burning more...so hopefully this thing does not progress more...hey, there is not that many more areas that it can go! I am waiting for results of skin biopsy, then will meet with the King of Periphereal Neuropathy at Weil Cornell. He wears a crown and everything.

Until then, it is all just:

http://www.youtube.com/watch?v=31SHkXAEd8A

idiopathic
 

Mark,
I was diagnosed with mild sensory, motor idiopathic PN. I also have no problems at night, only when I am off my feet, walking is ok. I do not have the tingling while walking. Maybe our PN will disapear, just like it came, abruptly. I still find it hard to believe that I got this monster, mine is mild too, I feel terrible for people with severe PN. This is terrible. I started my vitamin regimen also, I also have an appt at the Univ Of Chicago Jack Miller, suppose to be tops In Peripheral Neuropathy. hope it helps Good Luck, and keep us informed, Lynn

University of Chicago. Don't go there, I am grad, and look what happened to me.

Just kidding, there is great research coming out of there, and the docs look like they are top flight. U need to find the right meds in the meantime while you work on the other healthy component.

Be well, and great luck to you.

Mark

SadFeet
 

I hope you like J.M. they are very good.

Like others you have put a smile on my face as wel, Mark thank you.
Wondering if or when you drink does your feet itch? Drinking is on the
list in a big way of a no,no..I am on 3600 of Neurontin,hmmm makes me
walk like i'm drunk. Please visit again. Sue

LOL!! The fire I can relate to. My feet are on fire right now. It comes and goes. Hopefully they'll be able to pinpoint the problem for you.

For me I couldn't take Gabapentin. It made me suicidal. I take 1- 50mg Tramadol a day and when I need it, .125 of Mirapex. Works like a charm. Tramadol works very well on nerve pain for me. Nothing else mutes it in quite the same way. The Mirapex gets rid of many of the other symptoms, the creepy-crawly-gotta-move-my-legs feeling as well as some of the tingling and other symptoms. Mute seems to be a very good way of describing it as well.

I do have pain free days from time to time.

You've found a very good place to be, here on this board. I had no real progress in treatment or what to do, how to handle it all until I found this 'place'. :)

Hi there.

You are obviously a very very intelligent person. I got that from reading your posts.

Now here's MY question. Are you doing anything to lose weight? I'm not talking about going on a diet. I'm talking about lifestyle changes.

I had to do this. Took me YEARS. But I'm 61 and thankfully, doing this, probably saved my life.

I don't mean to come off as preachy. I'm not that way.

I wasn't ready all those years ago to lose the weight. I should have listened to others. I should have listened to my doctor when he told me "you need to lose weight, it's too much strain on your joints, on your heart, etc."

I thought they were all crazy. Guess what?? They were NOT crazy.

I tell you this because 300 lbs is too much to carry.

I made a great deal of changes in my life. I had no choice. Well, I DID have choice. I could keep eating the wrong stuff and ultimately die, or I could change my attitude towards food.

I did the latter.

Listen, going around with 300 lbs is no small thing. It's hard on the heart and other organs.

I say this with all the compassion I can muster.

If you make one small change, you can continue to make them, and one day, you will see that you weigh 200 and not 300.

You'll walk easier, you'll breathe easier, and you just might not be in so much pain.

Your body needs to be balanced.

And about the chiro-neurologist. His name is Dr. Scott Theirl. He has an office in NYC. and a website called functionalrestoration.com

Dr. Theirl also works with autistic kids. He does it all.

He literally saved my husband's life. When he went to him, he weighed 300 lbs, had severe neuropathy, and wore a Fentanyl pain patch. He was also stiff as a board and had never exercised.

That man made so many changes I can't begin to tell you. Alan saw him last week.

And a few months after beginning treatment with Dr. Theirl (and a change in dieting and exercise), my husband was able to get off the Fentanyl pain patch). No small accomplishment, let me tell you. My husband's neuropathy almost did him in.

He comes home a different person after one of those visits.

So look up chiro-neuros.

Ask questions. Not saying you should just jump in your car and go make an appointment. but ask questions.

You never know.

Melody

No feet itching from Mr. Lagavulin. Also, no real side effects from Gabapentin, aside from being not quite able to always verbalize what I want to say.

Yes
 

Glad there are no itchy feet...I do have the problem with being able to
Verbilize, to be honest my 3 children all in there 30's say that problem
came before the med. This could be true ,but I sent them home with
and remind them they owe Mama Sue lot's of money,,now if I can remember
for what. Ahhh read up on IGIV sure is helping me as does the b6,and b12.
and Morphine if needed..My Neuro does not believe in her patient's
screming in the night or day.Some have so much pain with PN others
feel very little,this once again is a good group,welll to do as poor as can be,
but we care about each other,and it's always nice to hear anything new from
someone new,once again come on by ya here.Best to all the rest,Hugs Sue

Just a thought
 

You mention that your legs feel fine when you are horizontal (sleeping or standing). But sitting, you get the burning pain. Have you considered your spine? There is definitely compression on the disks when you sit. Depending on whether you have any stenosis or not, this could be a causative factor in your leg burning.

Another post comidin user -Hey there
 

"Like my boy says, "Daddy drinks because he has to."":D

-LMAO so funny. I agree with the consensus on your humour. You know what I love about House? They never stop trying to find out what's wrong...wow! Just imagine if that really happened? We wouldn't all be here trying to figure out things for ourselves.

I just wanted to say "Hi". I'm over with the back pain people. It was pointed out to me that you had some problems and had been on Coumidin.
My problem is pretty much the opposite of yours in that I don't have problems sitting it's getting up from sitting and trying to walk that brings me down.

Interestingly though (albeit no doubt unrelated) in the past in the same leg that developed the clot I've had extreme itching and heat on the outer side of my thigh. It was not constant. It would just show up and then disappear. I remember one time where the heat was enough to wake me up. - This was years before the clot situation ....just one of those things that makes me go "hmmmm"

I also understand the weight issue. Mine has been up and down my whole life. Unfortunately the only way it's ever down is with working out and that has not been possible lately.
It never ceases to amaze me when a doctor says "Well,...you are overweight you know" Maybe we should make shirts that say "Don't ask...I know":)
I also know that being overweight for me is nothing new and that 9 months ago I was able to sit down and then get up afterwards! Now can we get on to that discussion!:mad:

LOL Ok. I'm back *phew* just had the need for a minor rant!:D

I hope you find a solution to your problems. If you want to chat about post thrombotic syndrome or coumidin give me a holler! :)

Mae

Just came across this thread.......

Mark, you don't seem to have any problems verbalizing, I was LMAO! Glad to see someone else with a nice perspective on things. I too am on 3600mg a day of Neurontin (as well as Methadone). Not much in the way of side effects either. I just need more Meth!

Anyway, welcome aboard! Keep posting so my funny bone can continue to be tickled!

Jay