NeuroTalk Support Groups - Greetings...Sensory Neuropathy, Skin Biopsy, Gabapentin party

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Quote:

Originally Posted by Ivpound (Post 436550)

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!?

Quote:

Originally Posted by Ivpound (Post 436620)

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

Quote:

Originally Posted by Ivpound (Post 436620)

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

Quote:

Originally Posted by Ivpound (Post 436620)

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!?

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.

Quote:

Originally Posted by Ivpound (Post 435128)

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

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

Quote:

Originally Posted by pabb (Post 437037)

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.

Quote:

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.

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

Quote:

The signs and symptoms of NSF include:

* Skin: Burning, itching, red or dark patches, swelling, hardening, or tightening
* Eyes: Yellow raised spots on the whites of the eyes
* Joints/Muscles: Joint pain or stiffness; limited range of motion in arms, hands, legs or feet; pain in the hips or ribs; muscle weakness

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: