06/19/2017 15:08
lddc7431
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Re: Update on my hyaluronidase injections
Hello all. I am back on Forum - I'm a long time member here and I've had Dup & LD for 30 years. I had 7-8 surgeries on fingers (pip nodules) and thought that was it, after my last surgery about 10 yrs ago. I also have fairly severe Ledderhose on both feet and have tried everything including RT with Dr. Herman at OU Oncology in 2010. For last five yrs, I've been pretty good - far from great (take pain meds for feet with PM Dr) - but suddenly? I have a fast growing pip nodule on my L pinkie & my R thumb. Thumb has a double bump and I was hoping it wasn't going to continue, but I know I'm going to have to get them removed. This makes almost all fingers now.
As for my feet, I am going to see Dr. Ed Davis in San Antonio in a few days. I've tried to read and research all I can on his enzyme injections, exactly like I did before I had RT. Like most of you thinking about this, I am cautiously optimistic concerning the long-term efficacy of this specific treatment. However, my feet have gone downhill, especially in the last year. I am 61 and have 30 yrs of this. The RT worked somewhat, but you would never know it today. I'm not sure if the enzyme injections will last, or how long they will last, so I'm curious as to severity affecting the outcome. I was unsure of RT, but was desperate. Now, even with pain treatment, my feet hurt more than ever - especially in the morning. But, even if this worked for 3-5 yrs, at this point, I would do it.
Let's face it - its progressive disease we are talking about. I have now changed my mindset from looking for treating the 'cause' and instead, simply treating the symptoms for relief. I have a friend that is a DNA Professor in TX and he said there may be a way to ID the malfunction in the DNA and changing the genome (all of this over my head.). The scar tissue buildup is the body NOT getting rid of dead cells etc. I don't know if this is stem cell stuff?
Anyway, I would appreciate any extra reports on your experience with the enzyme injections. I cannot see my feet getting worse without doing something and maybe being able to do away with RX medication to function. Does the pain go away with this treatment? Also, I am under the impression that LD is caused by inflammation? I have taken supplements for last three yrs trying to keep inflammation down, but the last six months has seen both conditions get worse. I looked at my last six months and there is one thing that occurred that could be a reason for the worsening of my LD. Stress. Lots of stress. My wife and I moved for first time in 36 yrs and, yes, everything about it was stressful. More than I could deal with at some times. From sleeping in my car to having to box decades of items, everything involved in moving 300 miles away (wife was offered a great job and went from a city that wasn't great to a city that IS). So, stress means cortisol increase, right? So, more cortisol, more foot pain and that, too, increases cortisol. So maybe LD is thriving on stress, mental anxiety, anything that puts strain on the body.
And, I've mentioned this before, but have even more solid evidence on this: if you do have pain and it is chronic? If you don't do something about chronic pain, changes that are negative (very bad and can be permanent) occur in your brain and it's called "Neuroplasticity" and unabated, untreated chronic pain MUST be treated in some way.
Thank you in advance for any feedback-advice on injections. At this point, I'm comfortable knowing I've done every single thing possible to help decrease this disease (both of them), so my only thought is how long this type of treatment works and if the nodules return - the same or worse - or don't know yet? I will pass my experience along as I did with my RT. I did read one thing worth mentioning: this works best on nodules that are more advanced vs. newer forming nodules. And, since RT in 2010, I have three nods on the Sides of my feet and it really affects the kind of shoe I can wear. As for RX medications for pain? I know some of you have considered this as a last resort for LD pain. I would say this: "if you have pain all day and it's been years? Go to a Psychiatrist first and ask about Neuroplasticity, then see if you are referred to a PM Dr." Will report back after finding some answers from Dr Davis or, if I DO get injections - I already know it will be 4 visits - for sure. At this point, the only thing that hasn't been tried ( but is being discussed) is the stem cell treatment - theory. Good luck to all with your journey.
Sign Watcher
Edited 06/19/17 18:09
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