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-   -   Just returned from follow up @ C.C. (https://www.neurotalk.org/peripheral-neuropathy/138575-returned-follow.html)

nide44 11-21-2010 10:37 AM

Are there any US oral studies on ALA?
The UK dosage was 600, but it was administered IV.
No oral studies I've heard of.
My neuro said 'it couldn't hurt' when I asked him about ALA
and then he gave out a print sheet to patients at a later time, that suggested
OTC ALA was OK, but didn't mention dosage.
I've been taking a 'maintenance dose' of 200/day for the past few years

mrsD 11-21-2010 10:51 AM

Examples:

http://www.ncbi.nlm.nih.gov/pubmed/20519180
(oral or IV mentioned)

http://www.ncbi.nlm.nih.gov/pubmed/19125705
(found improvements with both oral and IV)

http://www.ncbi.nlm.nih.gov/pubmed/18598095
(this one doesn't say but I am assuming oral )

There is a definite lack of US studies.... no one to fund them I guess. (Big Pharma is certainly not going to fund them )

It has always been Europe doing the most work on various supplements for PN and pain in general.

One thing most commonly reported about ALA is that results are slow in coming. At least 60 days, in some of the studies.

kpRN 11-24-2010 02:13 PM

Now I am worried.......
 
I just was bragging on how good I was getting along and now I have fallen on my face :thud:(thank heavens, not literally.) A couple of nights ago I had a severe attack of diarrhea and the very next day my symptoms have returned. Not so much worse on the pain and burning, but the numbness and awkwardness in my hands is back up to at least 60-70%. Now, I was also being weaned off the neurontin which was at 900 mg per day. I am now down to 300 mg at bedtime. So my question is......... :Ponder: did the episode of diarrhea deplete the levels of Alphalipoic Acid, or should I consider that I need to go back up on the neurontin? I was doing so well and this is like getting kicked in the stomach......makes me want to vomit!! :vomit2: Or cry or both. Was also thinking about doubling the dose of the ALA to 1200mg for a couple of days to see if that changes anything. Just want to hear what you all think..........:grouphug:

mrsD 11-24-2010 04:20 PM

Illness can do this... ramp you up. Also some infectious organisms actually cause PN. Campylobacter from improperly cooked chicken causes PN.

You might resolve once you get over this infection. For me GI problems can last a week or more. If this is viral, it might last longer than a week.

I think the inflammatory cytokines that are released by the body to signal the white cells, can also inflame damaged nerves.

kpRN 11-25-2010 09:52 AM

Kepping positive thoughts
 
Quote:

Originally Posted by mrsD (Post 719487)
Illness can do this... ramp you up. Also some infectious organisms actually cause PN. Campylobacter from improperly cooked chicken causes PN.

You might resolve once you get over this infection. For me GI problems can last a week or more. If this is viral, it might last longer than a week.

I think the inflammatory cytokines that are released by the body to signal the white cells, can also inflame damaged nerves.

Thanks Mrs. D. I am hoping that you are right and the symptoms will be short lived. After feeling so good for almost 4 months, this is pretty devastating. I think I will give it a good week or so before I start titrating the neurontin back up. Hate to take it if I don't need it. As far as the arthritis symptoms, gone with the use of the steroids. Don't want to be on those long term either. No results from the blood tests yet so I am assuming they are normal. Enjoy your thanksgiving.......I personally have a lot to be thankful for!!

mrsD 11-25-2010 10:19 AM

If you can take aspirin, you might try AlkaSeltzer for this flare.

I find that AlkaSeltzer (original formula) very handy for things like this that are triggered.

I discovered this years ago, back when NSAIDs were not OTC yet.

I always keep it on hand.

If you feel better after taking one dose....that points to inflammation and histamine as culprits. This can help you discover your triggers, etc. The bicarb in it blocks the histamine receptor temporarily, until that wears off in a few hours.

But not everyone can take aspirin, so do be careful, and only use when needed...not every day.

kpRN 12-01-2010 10:31 AM

Lab results are in.....
 
Quote:

Originally Posted by kpRN (Post 718212)
Actually, they could have but I was trying to hold off until after the first of the year since my insurance started 11/7/10 and I did not want to pay a deductible for 2010 and then in 2 months start over for 2011. Guess my body had other plans because i had to have blood tests drawn from my PCP for sed rate, C Reactive Protein and a Rheumatoid factor before they could even begin the process of making a referral. Apparently it will take up to 6 month but even longer if you don't complete the required labs. So, i will end up eating the costs of those but felt the testing for gluten sensitivity could definitely wait until after the first of the year.

Just called my PCP today to see if the lab results were back. They have been for almost 2 weeks. One nurse thought another nurse had called me so they were just sitting there.......waiting for me to call, I guess. Anyhow....

C-Reactive Protein 0.21 Normal <0.80
Sed Rate >120 Normal 0-20
RA Screen Negative

So, now I get to wait until after the first of the year to see a rheumatologist. Already had 2 rounds of steroids.........hope I make it through the rest of the year without any more flare-ups!!

mrsD 12-01-2010 12:11 PM

Do try the AlkaSeltzer then. This works very quickly and more completely than NSAIDs in IMO. In fact WalMart has a generic for $2.00! That is where I get mine! ;) AlkaSeltzer is one of the fastest oral pain meds on the planet.

Your tests are similar to mine. Although my Sed rate was never that high, it was moderately elevated every test.

I've had the ANA and RA screen 2 times several years apart with negative results both times.


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