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LD (w RT), DD (w NA and RT), and GD - may cancel round 2 of RT!
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09/06/16 05:46
aimestagg 
09/06/16 05:46
aimestagg 
LD (w RT), DD (w NA and RT), and GD - may cancel round 2 of RT!

My quality of life has changed drastically this year and now I need to make a major decision regarding my course of treatment(s) and would to hear from anyone that may have a similar story. My history:
1. ~30yo LD in both feet, several small nodules in the arches, with no real negative impact other than stiffness in the morning.
2. ~35-38 Pregnancy x2 + breast feeding and the LD nodules disappeared (!!!) only to return in full force afterwards. Hormones???
3. ~40yo several of my knuckles flaring and red on occasion and larger. Thought I had arthritis but xrays were negative and the doctor mentioned DD relationship, even though I didn't have DD. It was Garrod's Disease
4. 48yo pinky finger develops lump on the palm side of the hand. Uh oh! Is this the GD or something else?
5. 49yo in 1 years time my pinky contracted about 110degrees so I had NA to straighten it, which basically fixed the contracture but I needed a brace almost 24/7. It also created a whole new problem for me...The joints/knuckle in my pink are now horribly painful all the time, especially when I remove the brace and try to close my fingers. OMG! I went to an occupational therapist who said this is not typical for NA. I truly thought my finger was broken but it never really swelled up. Most patients have little to no pain afterwards. I'm thinking the doctor cracked through the GD - when I asked him, he didn't really have an answer for that and didn't seem to want to discuss the GD at all. 2 months later the pain has not improved at all.
6. 49yo has not been a good year for me:
6a. at the same time as 5 (above) was happening, both of my feet are aching and painful every night and it seems like the LD is activated again. L foot has many small nodules. R foot has one larger nodule and a small one and also something seems to be happening across the span of the whole arch area of my foot (no longer just along the ligament).
6b. I developed pitting and pre-contraction on my other hand in 9 months
6c. I began RT on the 6b hand and L foot. No side effects really in my foot but the pitting in my hand that seemed active when I started RT, continued to be active and worsened after round 1 of RT.
6d. I began RT on the #4 pinky finger to prevent the repeat contractions the doctor said wound definitely happen. Also had the R foot done which was more painful than the other foot when I started RT.

The 6d outcome has been very bad for me and I am terrified that I did something really horrible to my feet now. The disease used to be all up in the arch area but now I have had an acceleration of the disease, with a mass now filling my entire middle area of my foot and now everything touches the ground making me flat-footed or worse. I am in horrible pain doing anything in my active life, to a point that I have stopped or significantly cut back on walking, dancing, exercising, etc. My quality of life has been measurably reduced in the last 2 months due to this. In addition, the finger I had NA done on contracted to about 30 degrees suddenly on the 5th day of the first round of radiation! With bracing ~22 hrs/day I can constantly fight it back into 10 degrees, but will immediately contract again to about 30 degrees when left alone.

7. Two days ago, I went to a holistic naturopathic doctor and have started using topical and oral magnesium, DMSO, Vitamin E and had a hair sample taken to look for levels of toxic metals and other things that might be out of balance. Since I'm 49, and possibly premenopausal, I wonder if hormones are playing a negative role in this like they may have played a positive role during my pregnancies. Things that make you go "Hmmmmm". We discussed verapamil as an possible option, but maybe not yet. Don't want to start too many things at once.

8. I am supposed to start round 2 of RT in 2 weeks and I should probably abandon this effort with the realization that that's it, I can't change my mind later (I don't think).

A little more information about me. Both of my parents have DD with multiple surgeries to correct the severe contractions starting in their 50s. My mother is now having her knuckle joints replaced in several fingers that will no longer bend at all (they said she has arthritis now, but admitted they weren't sure exactly what was happening to her). We are all hardworking people, not laborers, but have abused our hands with building, gardening, etc and in my case I was also a competitive Irish dancer and my feet probably took a beating.

OK, that's more or less my story. Thanks for reading!

Edited 09/06/16 05:50

09/06/16 09:50
spanishbuddha 

Administrator

09/06/16 09:50
spanishbuddha 

Administrator

Re: LD (w RT), DD (w NA and RT), and GD - may cancel round 2 of RT!

Thanks for sharing.

DD and LD are a specific form of fibrosis which can and does affect other parts of the body, including the dorsal finger joints creating Garrods Pads (I have never heard of It called Garrods disease). If the fibrosis is wildly active then some people do seem to react to interventions such as NA or surgeries or injuries requiring healing. A holistic viewpoint might help, but be cautious that your wallet is not lightened with no real evidence base for the proposed treatments. Instead review the established risk factors if they apply to you.

RT is helpful in approximately 85% in slowing down DD/LD; who and where and how was it done in your case? Your response does not sound typical, unless you're one of the unlucky 15% or have something else going on.

I wonder if you have had any or full blood work looking for specific inflammatory or autoimmune markers or liver function tests also hormone levels?

Best wishes SB

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