SFSN Diagnosis Just In

mrsD · 01-22-2009, 04:53 PM

Quote:

Originally Posted by Ivpound

Flare ups....yep...I got em.

And Hope re "So is it a fact that when it is proven that a drug did cause ones neuropathy, it can in some cases be reversed, or improved, or at the very least stop the progression?"

The answer to the above is yes. Progression can stop definitely....he said the symptoms can least a year or more, and I might just go numb (my wife would already say I am,but that is a different story). He said I should see improvement....

Mark

Many people over the years have been damaged by drugs.
Statins and fluoroquinolone antibiotics are the most common.
I am unaware of recovery from these. You can find forums all over the net about this topic. There has been a recent hint that IV glutathione may help recovery from the fluoroquinolones.

Damage from chemo is sometimes preventable if acetyl carnitine is used before and during the chemo. The AIDs community uses it too.

So what drug damaged you, Mark?

If this is viral, you may see improvement. Or not... there are no guarantees.

I hope you do show improvement. But it would be nice to have some answers to work with. Such as why you are low in B6.
Let's hope that P5P stays on the market long enough for you to use it successfully.

Ivpound · 01-22-2009, 06:40 PM

Coumadin....blood thinner after clot for 7 months. 2 weeks after discontinuation, my leg starts burning. Latov seemed pretty convinced of the course given the results of the skin biopsy etc. he said it could totally remit, or I can have a vestige. Most likely some numbness, if the nerves flame out.

Ivpound · 01-22-2009, 06:43 PM

also, different labs give different results....my b6 was normal from another series of testing 3 months prior. however, latov uses and verifies his own labs differently. if the pain abates, i will be fine with this. there are folks a lot worse off than I. The pyloria (etc) symptoms you listed....I have a lot of em.

dahlek · 01-22-2009, 07:23 PM

to the same lab for all blood work is the way to go.... my docs hate me for it? But because I get IG infusions.... They should only be done a day or two before my next infusion or the #'s get really skewed! And, they have! Besides, I've found the labs to be far, far more skilled than most doctors' offices on the whole as that is ALL they do! Take bloodwork, that is. Latov's offices might be better than most though.
I do like the fact that one lab does all these reports though because, all subsequent reports come in the same format....making it easy to keep watch and record on separate worksheets the info in a consistent sort of manner.
Some drugs can and DO cause irreversable additional PN, but I doubt that you will ever see a drug co. ADMIT that? This might be listed in their very fine print of 'Prescribing Information' ...usually under the less frequent, but reported types of side effects. Spend about 1/2 hour each with the drug company and report it - IF you can directly tie cause/effect - AND the FDA. That's about all you can do. I have seen that at times new 'black box' notifications have been added when the FDA gets enough reports tieing a med to cause and effect. It's tedious? But it can be rewarding.
The supplements many suggest here are NOT worthless, they can help you try and get your body in a better position to HEAL. And, healing is what we all want! It can take a long time tho, for some...a very long time.
I wish you the best of luck in your efforts. Hope this helps? Best always - j

dshue · 01-22-2009, 07:33 PM

Quote:

Originally Posted by Ivpound

Ok folks, hot off the press, went to see Dr. Norman Latov to get my results. 99.9% bloodwork normal--not even close to pre-diabetes. That was a relief. However they picked up that I was fairly deficient in B6, which he feels strongly is the root cause of the neuropathy. He said the skin biopsy revelead a mild to moderate small fiber neuropathy. Here are the numbers, feel free to talk amongst yourselves:

Diagnosis: Lt Cal, Epidermal Nerve Fiber Density: Skin with significantly reduced epidermal fiber density, consistent with small fiber neuropathy.

Lt. Thigh: Skin with normal epidermal nerve fiber density

Numnbers were

Lt Calf = 2.6 Abnormal is <5.4 Low Normal= 5.4 - 5.7
Left Thigh = 11.53 Abnormal is <6.8 and low normal is 6.8 - 8.0

No evidence of vasculitis or other histological . No amyloid detected by the Congo Red stain (I had asked for a Congo Magenta stain, but I was denied--that is a joke, please don't ask your doctor for this).

So he said that 50 mg B6 (and I think he also said I can also take niaminicide or something?) would have to be taken for at least a year. I had started with p-5-P per Mrs. D. He was fine with that. He also said it could resolve itself, but it would take at least a year to find out. Hard to predict, but he definitely felt that it will not progress to motor or autonomic (99% was the number he used), for which I was very grateful.

I also have these suspicious looking white spots on my hands....he commented that it could be vitiglio (sp). Great, I am turning into Michael Jackson. Latov laughed and asked if I wanted a glove--I told him the sequins would not look good on the surgical gloves he had. At that point, he asked whether I had sores or burning in my mouth (I did and thought I had BMS). He said that will abate over time as well...the guy is expensive, but he is good.

So, now onto my favorite topic. Pain management. 3,600 mg of Gabapentin, and it ain't doing the trick. So, he said that Cymbalta has a synergestic effect with Gabapentin. Since my knowledge of neurochemistry is limited to dissecting a pig in my bio class 30 years ago, I nodded sullenly and agreed with him. At that point, the pig had nothing to say either. So, 20mg, building up to 4 X per day. He said I could get relief from lower dose, but see how it goes. Not sure he liked my joke about frying bacon on my extremities...I think he keeps Kosher.

Thanks to everyone for listening. This has been quite the humdinger thus far. Figuring out what caused the B6 deficiency is the real rub (could coumadin have caused this?!???). Don't know, but hope all is well with everyone.

Mark

What??? Success? Answers? How dare you...

Seriouly, stupendous news there Mark. Sounds like the pricey doc is on to something.

I look forward to reading your musings. Please keep the posts coming on your progression to pre-inferno levels.

-- Dennis

Ivpound · 01-22-2009, 07:36 PM

Quote:

Originally Posted by dshue

What??? Success? Answers? How dare you...

Seriouly, stupendous news there Mark. Sounds like the pricey doc is on to something.

I look forward to reading your musings. Please keep the posts coming on your progression to pre-inferno levels.

-- Dennis

http://www.youtube.com/watch?v=NMSMViyCVNI

Not quite JT strutting with my paint can, but u get the idea.

Monica de Lara · 01-23-2009, 11:21 AM

Ivpound, can i ask you what your levels of b6 are??

I recently got tested for some vits and these are my results:

Vitamin B1 4.0 μg/dL
Vitamin B6 67 nmol/L
VITAMINA E Alfa-Tocopherol 8.4 mg/L 2.4 - 20.0
Gama-Tocopherol 1.1 mg/L 0 - 4.7

The ranges from the lab say this is normal, but i have heard it is a different story for people with neuropathy, are these levels normal for people with neuropathy?

Ivpound · 01-23-2009, 11:57 AM

Quote:

Originally Posted by Monica de Lara

Ivpound, can i ask you what your levels of b6 are??

I recently got tested for some vits and these are my results:

Vitamin B1 4.0 μg/dL
Vitamin B6 67 nmol/L
VITAMINA E Alfa-Tocopherol 8.4 mg/L 2.4 - 20.0
Gama-Tocopherol 1.1 mg/L 0 - 4.7

The ranges from the lab say this is normal, but i have heard it is a different story for people with neuropathy, are these levels normal for people with neuropathy?

I defer to Mrs. D on this....I know little about the whole vitamin thing. Everyon's levels might be somewhat customized to their metabolism and size.

mrsD · 01-23-2009, 01:36 PM

Quote:

Originally Posted by Monica de Lara

Ivpound, can i ask you what your levels of b6 are??

I recently got tested for some vits and these are my results:

Vitamin B1 4.0 μg/dL
Vitamin B6 67 nmol/L
VITAMINA E Alfa-Tocopherol 8.4 mg/L 2.4 - 20.0
Gama-Tocopherol 1.1 mg/L 0 - 4.7

The ranges from the lab say this is normal, but i have heard it is a different story for people with neuropathy, are these levels normal for people with neuropathy?

Labs in different countries report differently.
Vit B6 is also reported as 5-30 nanograms/milliliter for "normal"
(I don't know the conversion to nanomoles as reported in Monica's post).

Labs choose ranges based on statitistics of an average of what they consider "normal"...these ranges are often different and
should be reported with the results. People often don't realize that the "normal" range is pretty arbitrary.

I think most vitamin testing is iffy myself. The very high and very low numbers suggest something, with the middle range meaning very little. This is because some people REQUIRE more than others. In the case of B6..there is a condition called B6 dependency, which means that those patients require much more than "normal".
http://emedicine.medscape.com/article/985667-overview

Also autistic patients often test high for B6 even when they do not use supplements. This is thought to be due to faulty conversion to P5P in the liver, and the pyridoxine just accumulates in the serum. But the true explanation is still unknown with certainty.

Metabolic differences between people exist and can be significant.

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