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01/05/2004 23:58
John Bull

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01/05/2004 23:58
John Bull

not registered

Options?

Some weeks ago now I noticed a hard, painless lump developing in the palm of my left hand. I knew immediately what it was, as I have had Peyronies now for almost five years.

In the last few weeks, I have been experiencing intermittent, but sharp stabbing pains in the afflicted hand. Also, I get periodic tingling and numbness in the hand, especially at night.

The question I would like answering is this: is it worth seeing a doctor about this at this stage, as I know from my experience with peyronies that although there is no cure, in the early inflammatory stages, drugs such as Potaba are sometimes recommended. Personally, I am rather sceptical about anything halting its progress once it starts (again, my experience with peyronies is relevant here).

The big difference I have noticed with regard to the pain accompanying DC and PD is that in the former it seems to come and go regardless of whether my hand is at rest, whereas in the latter it is triggered by a specific event - i.e. an erection, due to damaged erectile tissue in the tunica which can no longer stretch in response to blood flows into the penis. I have never had pain when my organ is in its flaccid state.

01/05/2004 23:02
John Bull

not registered

01/05/2004 23:02
John Bull

not registered

Thank You

Hi Val,

Thank you for your very helpful and informative reply, which is much appreciated. I will be trying the Vit E oil to start with, to see if this does the trick. I have also been trying to 'rest' my left hand as much as possible, but as I am naturally left-handed I am finding this quite difficult.

with best wishes,

John

01/06/2004 23:57
Tom M

not registered

01/06/2004 23:57
Tom M

not registered

early stages

John:

You are doing the wise thing to monitor this at the earliest stages and do what you can do prevent rapid advance. I've had nodules for about 25 years, slowly progressing but not advancing to contractures. I avoid vitamin C, take large quantities of vitamin E, take lecithin, use vitimin E oil, etc. I've avoided any injections in the nodules, preferring to deal with them as they are rather than risk aggravating the situation by the trauma of injection. Good luck to you.

Tom M

01/06/2004 23:30
Steven B

not registered

01/06/2004 23:30
Steven B

not registered

Vitamin C

Tom M,
Could you elaborate on your avoidance of C?
Thanks in advance...

01/06/2004 23:31
jim h

not registered

01/06/2004 23:31
jim h

not registered

vitamins, etc...

The vitamin E oil definitely makes it feel better. Whether it inhibits the progression, only a controlled study could establish. It may be that the benefit comes from just the oil, and the vitamin E doesn't do anything.

01/06/2004 23:30
Tom M

not registered

01/06/2004 23:30
Tom M

not registered

vitamins, etc...

Steven:

In following the discussion on this site over the last several years, and having studied it through the years, I've become convinced that individuals vary quite widely in how rapidly the disease advances, in what triggers it, and in regard to how they respond to various treatments. Simply put, what works for one person may be less successful for the next. Having said that, my position has been that it is prudent for me to avoid those "triggers" that seem to impact some individuals, and to pursue those benign treatments that seem to bring me some success.

If you read through the postings on this site, you will see that there has been frequent discussion of vitamin C as a possible trigger -- with some suggestion that it might relate to the production of collagen. Others have posted their experiences with glucosamine as a trigger. Thus, I tend to avoid those. On the other hand, I have personally found some benefit from increasing my consumption of vitamin E and from the application of vitamin E oil topically. More recently I've been taking lecithin, which also seems to have some positive effect -- mainly, I can tell that the nodules subside a bit. I'm fortunate -- I've had nodules for many years, but have avoided contractures.

Again, because Duputryn's varies from person to person, others may have much different experiences. One of the benefits of this forum is that it provides a mechanism for communication of anecdotal information that may (or may not) be helpful, depending on the individual.

Good luck...

Tom M

01/06/2004 23:20
Tom M

not registered

01/06/2004 23:20
Tom M

not registered

additional thought

Sean:

I understand the science behind the published studies. I also understand that the literature only reflects what is measured across a cohort, and not individuals.

Reflecting on the many exchanges I have read between you and others regarding NA and surgery, I am even more convinced that what works for one does not work for all. I tried to make that clear in my earlier post. I believe there is some value in anecdotal statements regarding personal experiences. After all, your statements on your surgery are anecdotal. Please extend that idea to alternative treatments.

Blind tests that are inconclusive do not prove that there were no positive results. They only prove that, in the sample population sample, the total differences were not statistically significant.


01/06/2004 23:10
Sean 
01/06/2004 23:10
Sean 
treatment

Tom M,
I completely agree with you. I am not saying that I endorse the information. I was just throwing it out as information. I think we can all agree that Dupuytren's does not react the same for everyone. That is what makes it interesting.

I do put some value on the work of many of these people who have spent much of their adult life studying the disease. Most of the studies are done to be scientifically and statistically meaningful.

01/07/2004 23:59
Don Westin

not registered

01/07/2004 23:59
Don Westin

not registered

abstracts

I frequently review scientific articles in my field....biology. Beware of drawing conclusions about any study from an abstract as Sean does. Abstracts can be misleading. For example, Seans citing of Hurst and Badalamente states: "Most of these therapies have not proven to be clinically useful". Also: "enzymatic fasciotomy using collagenase injection has shown encouraging results." Some other therapies may be clinically useful as well, but we will not know until we have access to the entire article.

01/07/2004 23:02
John W.

not registered

01/07/2004 23:02
John W.

not registered

shill

Is Sean/Gary a shill for biospecifics? It seems he tries to draw attention away from NA. If enough US doctors learn NA, maybe collagenase won't be as successful.

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