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Trying to decide my course of treatment
 1
 1
04/04/20 07:06
am9550550 
04/04/20 07:06
am9550550 
Trying to decide my course of treatment

SO curious to know your age at diagnosis? I was diagnosed in may of 2017 at 42, I am a female. Grandmother had it but not until late in life. It began after some trauma and was just a lump on the middle joint of my left non dominant pinky. It was fine then mistakenly had a garrods node taken out on my right middle finger, had a doctor tell me had nothing to do with Dups not would trigger anything more. A NYC hand surgeon from NYU Lagome. Yeah, anyway fine and 6 months later the Garrods pad came back in my middle right finger as well as a small nodule on the middle joint of the inside of the finger and a small nodule on my ring finger next to it on the inside middle joint. No pain or mobility issues so was told to wait. So fast forward a year, March 2020 and wow, within a matter of weeks had some nodules in my hand and severe pain, never had pain before in my hands or any bumps or nodules. A cord is starting. Checked into radiation and can have it however the corona virus will halt this for some time. So have the pinky on the left hand a 5% contracture and the ring finger on the right hand a 7% contracture. The burning, stiffness, it is unbearable! Ordered many supplements and creams that found in forums by patients to work.

Doing B2 with K3, tumeric mix, cbd oil, magnesium supplements. Waiting on my Amazon order of DMSO and magnesium cream and some gloves. Even washing my hair seems hard from this pain. Also, waiting on my script for Virapamil.

So questions, how was your RT, especially if you had it younger like myself. Will be doing it at 45. What are the mixes of topical that have worked for you, and lastly any type of night splint to recommend that I do not have to have custom as again everything is kind of closed as far as non emergency treatments. I saw Fixxglove, can I use this prior to RT? Any other sleep or typing splints anyone has used perhaps from Amazon?

Any help is appreciated with your experiences with RT and supplements and creams as well as something to sleep in comfortably As well as another brace to protect me while I am typing.

Thank you, know it is a lot of questions.

Hope everyone is okay and safe!

04/04/20 08:14
Stefan_K. 
04/04/20 08:14
Stefan_K. 

Re: Trying to decide my course of treatment

Hi am,

The typical onset of DD is in the fourties. I myself was diagnosed at 44.

Splinting has worked for me for the past five years in combination with RT when my pinky started bending again shortly after NA.

If you have a glove and something to insert to stiffen the pinky, ideally cutting off the tips to avoid sweating, that could be a solution for you. I describe the splint I made with a cycling glove and an ice cream stick here:

https://www.dupuytren-online.info/Forum_...2023&page=1

All the best

Stef

[57, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]

04/04/20 20:53
am9550550 
04/04/20 20:53
am9550550 
Re: Trying to decide my course of treatment

Thank you for the help. Can you let me know what kind of gloves you have?

04/04/20 22:20
Stefan_K. 
04/04/20 22:20
Stefan_K. 

Re: Trying to decide my course of treatment

I use very inexpensive cycling gloves that I have lying around anyway. You can see them at the link I posted. The advantage is that with the open tips you don't sweat or not much. The usually have an velcro/scratch closure that let's you adjust tightness. You can also find similar gloves for DIY work. Take the size that is tight enough to hold the stick in place but comfortable. The idea is not to stiffen the finger completely, but avoid making a fist as we tend to do in our sleep. Good luck and let us know if you try it.

Stef

[57, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]

04/04/20 23:17
Prof.Seegenschmiedt 
04/04/20 23:17
Prof.Seegenschmiedt 

Re: Trying to decide my course of treatment

am9550550:
SO curious to know your age at diagnosis? I was diagnosed in may of 2017 at 42, I am a female. Grandmother had it but not until late in life. It began after some trauma and was just a lump on the middle joint of my left non dominant pinky. It was fine then mistakenly had a garrods node taken out on my right middle finger, had a doctor tell me had nothing to do with Dups not would trigger anything more. A NYC hand surgeon from NYU Lagome. Yeah, anyway fine and 6 months later the Garrods pad came back in my middle right finger as well as a small nodule on the middle joint of the inside of the finger and a small nodule on my ring finger next to it on the inside middle joint. No pain or mobility issues so was told to wait. So fast forward a year, March 2020 and wow, within a matter of weeks had some nodules in my hand and severe pain, never had pain before in my hands or any bumps or nodules. A cord is starting. Checked into radiation and can have it however the corona virus will halt this for some time. So have the pinky on the left hand a 5% contracture and the ring finger on the right hand a 7% contracture. The burning, stiffness, it is unbearable! Ordered many supplements and creams that found in forums by patients to work.

Doing B2 with K3, tumeric mix, cbd oil, magnesium supplements. Waiting on my Amazon order of DMSO and magnesium cream and some gloves. Even washing my hair seems hard from this pain. Also, waiting on my script for Virapamil.

So questions, how was your RT, especially if you had it younger like myself. Will be doing it at 45. What are the mixes of topical that have worked for you, and lastly any type of night splint to recommend that I do not have to have custom as again everything is kind of closed as far as non emergency treatments. I saw Fixxglove, can I use this prior to RT? Any other sleep or typing splints anyone has used perhaps from Amazon?

Any help is appreciated with your experiences with RT and supplements and creams as well as something to sleep in comfortably As well as another brace to protect me while I am typing.

Thank you, know it is a lot of questions. Hope everyone is okay and safe!

Dear affected 42 year old female "am9550550"

from WHERE (? = New York City, NYC ? USA ? )
> with some RISK FACTORS (family, genetic, evtentually additional factors)
> being hit by Morbus Garrod and Morbus Dupuytren (ICD M72.0 and M72.1)
> still at an early stage of the disease as far as I understand from the statements
5% or 7% contracture which probably means 5 or 7 degree of flexion deformity

For further judgement, please provide photographs from both hand palms and th backside of both hands and in addition please answer whether you have one of the following disorders:

> Do you suffer from liver disease ? diabetes ? thyroid disorder ? smoking ? alcohol ?

> Could you mark or note down which areas of your hand are affected by pain ?

> Do you wake up with pain during he night and therefor is carpal tunnel syndrome excluded ?

> Did or do you currently suffre from frozen shoulder syndrome ?

If these additional questions are answered I may be able to give some still potentially effective options for you

Prof. Dr. med. M. Heinrich Seegenschmiedt (prof.seegenschmiedt@gmail.com)

With gratitude for all affected patients & medical colleagues who help to advance patient care ...

Edited 04/04/20 23:21

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