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Feel like I'm going to die........
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05/04/2015 12:58
Seph 
05/04/2015 12:58
Seph 

Re: Feel like I'm going to die........

Tusk:
Well if you have it in both hands and both feet, with pain and finding it difficult to work, it really isn't a disease you want to get. Point is aggressive versions of this disease, which you may have, can be much worse than the versions most other people have. You need to explore RT. It could help resolve some of your issues.


Tusk; I have it both hands and both feet. and I have had for 40 years.

I watched a friends wife die from ovarian cancer last year and a mate died 6 weeks ago from a massive heart attack. Those are problems you don't want to have. DD and LD are not problems when put alongside these issues.

RT might work but when you get the disease young you need to plan a slow and minimalist strategy. You aren't going to die from it so you need to manage it.

I know I sound aggressive on this point but I really do think that people who develop it young should be able to push through rather than succumb.

08/20/2016 14:04
Militarybooks 
08/20/2016 14:04
Militarybooks 
Re: Feel like I'm going to die........Tumeric

DUPUYTREN'S CONTRACTIVE

I had it in my left hand, a moderate nodule on the ring finger tendon, no pain, but it was bothering me. I play piano and bass and wanted it fixed before it bent down my finger. I had surgery. The recovery (large cut in the palm of your hand) was hard, but my doc was good and it healed.

2 years later the nodule was back, small but faster-growing than the first one. It grew moderately large, no bending of finger, BUT the pain was excruciating. If I bent my finger back it felt like a needle was going through the upper palm of my hand. Even without bending, I woke each day in pain, and then during the day felt it at some level. The darn thing was right on a nerve. I told my band mates I may need surgery again but will try to put it off until 2017. (The recovery before I can play guitar again is about 3 months.) I massaged, it tried, oils, etc. It all made it worse.

I developed a sore shoulder and nothing worked. So my friend said try Turmeric. I started taking 4-6 a day, with little relief. So I increased it to 10. My shoulder pain subsided. HOWEVER, a few weeks later I realized mid-day I had no pain in my hand. None. I then noticed the DUPUYTREN'S nodule had shrunk dramatically, and was about 1/4 its original size. I was shocked. I stretched my ring finger back, which in the past triggered intense pain. Now, just very mild discomfort and mostly along the original surgery scar.

That was about one month ago (mid-July 2016). I continue taking 10 pills a day of Tumeric, and the nodule may have shrunk a bit more, but I have NO pain. It is as if I do not have DUPUYTREN'S in my hand at all.

TRY IT. Take it religiously. My hunch is after 2-4 weeks you night see a dramatic improvement. If you don't, big deal. You tried. If you do....Good luck. My email is militarybooks@sbcglobal.net if you want any more info. I don't check blogs much.

08/20/2016 14:46
wach 

Administrator

08/20/2016 14:46
wach 

Administrator

Turmeric

I am taking turmeric for other reasons and it does not seem to affect my Dupuytren's. It might be that your experience is by coincidence. Another possibility is that your nodule was inflammed and turmeric reduced the inflammation, which what it is meant to do. If the Inflammation is reduced the size of the nodule would also shrink.

BTW, the cancer related part of your post was removed because this is a forum on Dupuytren disease and we will not advertize alternative treatments for cancer.

Wolfgang

Edited 08/20/16 18:39

08/20/2016 15:06
Militarybooks 
08/20/2016 15:06
Militarybooks 
Re: Feel like I'm going to die........

Wolfgang

Thank you.

How much Turmeric are you taking? (When I did 2, 4 and even 6 a day--nothing). When I upped it to 8 and 10 for several weeks--wham.)

Coincidence--based upon what? If I have a fever and take some homeopathic substance and the fever goes away--that could be coincidence.

But according to my hand surgeon, Dupuytren's never reduces on its own. It only moves in one direction--it gets worse by getting larger, and slides up the tendon in elongated fashion until it curls the finger. (It is usually NOT associated with intense pain.)

(The cancer part--that's your call. It makes no sense to me since it could not hurt someone and provides back story, but this is not my forum so have at it).

Edited 08/20/16 18:07

08/20/2016 15:38
wach 

Administrator

08/20/2016 15:38
wach 

Administrator

Re: Feel like I'm going to die........

Your hand surgeon is certainly right in most cases but not in all. Untreated remission is rare but possible.

For evaluating various radiotherapy regimes Seegenschmiedt et al. had been tracking also an untreated control group. After 5 years they found about 40% of this control group in stable condition or with remission, 60% with progression.

Millesi, a famous Austrian hand surgeon and expert in Dupuytren disease, writes in a chapter on the pathogenesis of Dupuytren's disease
"a commonly published misconception is that the natural course of Dupuytren disease is continuous progression (like a malignant tumor) and that successful treatment stops progression. This is certainly not true. Cases of spontaneous regression have been described." (In P. Werker et al. (eds) Dupuytren Disease and Related Diseases - The Cutting Edge; Springer, 2016).

Wolfgang

Militarybooks:
.... But according to my hand surgeon, Dupuytren's never reduces on its own. It only moves in one direction--it gets worse by getting larger, and slides up the tendon in elongated fashion until it curls the finger. (It is usually NOT associated with intense pain.)

(The cancer part--that's your call. It makes no sense to me since it could not hurt someone and provides back story, but this is not my forum so have at it).

08/20/2016 15:57
Militarybooks 
08/20/2016 15:57
Militarybooks 
Re: Feel like I'm going to die........

Thanks for this.

Being a cause and effect person, and having had this before with no remission in the past, I am fairly confident the Tumeric, taken just 2-3 weeks intensely before the nodule noticeably reduced and the pain vanished, is good evidence it was not coincidence. But, who knows?

I am concerned that if I stop taking it, it will come back and then not go into remission again, so I will continue to take it.

08/20/2016 17:48
Militarybooks 
08/20/2016 17:48
Militarybooks 
Re: Feel like I'm going to die........

After reading this (below) on your site, I am surprised you offered the opinion it was merely coincidence.

http://www.dupuytren-online.info/Forum_E...-dc-4_2794.html

Edited 08/20/16 20:48

08/20/2016 20:48
Stefan_K. 
08/20/2016 20:48
Stefan_K. 

Re: Feel like I'm going to die........

Militarybooks:
After reading this (below) on your site, I am surprised you offered the opinion it was merely coincidence.

http://www.dupuytren-online.info/Forum_E...-dc-4_2794.html
Exactly what information from the linked thread have you interpreted as evidence that what you have observed is not a coincidence or due to some other factor?

Certainly not this quote: "The upshot is that inhibiting TGF-beta 2 might not have any effect on Dup's progression"

Your inflamed nodule may well have reacted well to you taking Turmeric. But then again it may have improved for other reasons. Nobody knows, and much less how it works for someone who actually develops a cord. I can tell you from my own experience that it is very easy to attribute a positive change in the evolution of the disease to this or that factor. I myself had cords shrink in size just as I was about to have radiation therapy. I can assure you I would have attributed that positive evolution to the radiation therapy had I started it a little earlier. it certainly seems prudent to accept that there are numerous factors impacting the evolution of DD and it isn't always possible to identify and isolate them. I also understand why for you personally you wouldn't want to take the risk and stop as long as it seems to work. I myself have been taking a molecule against hair loss for 15 years after loosing a lot of hair during a stressful period. It worked at the time and I haven't had the courage to stop and observe what happens, even though the triggering factor, stress, has subsided.

The most useful thing you can do to help the development of alternative treatments is continue to share your experience over a longer period of time while keeping an open mind about the possibility of other factors coming into play. Everybody here will be happy if it continues to work for you and for others. We should just avoid getting excited too early about yet another wonder drug.

Stef

[54 year-old male, DD diagnosis 2006, RH contracture and NA/PNF 2014, RT 2015, wearing night splint glove]

08/20/2016 20:53
Militarybooks 
08/20/2016 20:53
Militarybooks 
Re: Feel like I'm going to die........

Stef

You are creating a strawman argument that is false.

I never said it was a wonder drug. I wrote specifically that it worked for me, and others might try it if they wished, and it might work for them. If so, great, and if not, there was no real loss.

Never once did I say it would work for anyone else or it was a "wonder drug."

I will keep you posted, each month as it continues. But then, six months from now, the same "coincidence" argument will be made, meaning we will be back logically where we are right now.

My suggestion: try Tumeric, in high doses (8-10 750 mg pills a day) and see if you experience any difference a few weeks later. You have nothing to lose.

Edited 08/20/16 23:58

08/20/2016 22:52
Stefan_K. 
08/20/2016 22:52
Stefan_K. 

Re: Feel like I'm going to die........

Militarybooks:
Never once did I say it would work for anyone else or it was a "wonder drug."

I will keep you posted, each month as it continues. But then, six months from now, the same "coincidence" argument will be made, meaning we will be back logically where we are right now.
You are right. You never said that. You only wrote

Quote:
TRY IT. Take it religiously. My hunch is after 2-4 weeks you night see a dramatic improvement.

I am the one who would consider an inexpensive substance which improves Dupuytren's Disease dramatically in 2 - 4 weeks a wonder drug, considering that today there is no cure at any cost. Of course we can disagree on that, as we can disagree on whether an evolution which follows a change in treatment is necessarily its result or if there is anything in the three pages linked above which proves the effectiveness of turmeric for DD.

Please do report back. I would love to see the long-term effectiveness confirmed. It could be great news for many of us.

Stef

[54 year-old male, DD diagnosis 2006, RH contracture and NA/PNF 2014, RT 2015, wearing night splint glove]

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Seegenschmiedt   treatment   Diagnosis   alternative   disease   faster-growing   militarybooks   progressively   dupuytren-online   progression   surgery   Coincidence--based   effectiveness   planterfaciatis   experience   direction--it   Turmeric   DUPUYTREN   psychologically   coincidence