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Twitchy/Achy Feet at Night/Ledderhose
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11/17/10 02:34
Sentinella 
11/17/10 02:34
Sentinella 
Twitchy/Achy Feet at Night/Ledderhose

I have had twitchy feet at night for about 10 years. Sometimes so bad I can't sleep or I wake my wife up because my feet and legs violently jerk for no reason.

I just found out in June I have Ledderhose in both feet and Duputrens in my left hand (have probably had it for 2 years, but didn't know what it was, I was misdiagnosed a few times). In July, August and September I went through Radiotherapy for my left hand and both of my feet. I haven't noticed my feet twitching at night for about 1 month now. Do you know if one of the symptoms of Ledderhose is achy twitchy feet? I assumed I had RLS and just dealt with it since I HATE taking medication.

BTW Radiotherapy seemed to have helped my Duputrens, it's been 4 months since the treatment, the nodule has softened, the pain has almost subsided, and the tightness is GONE. As for my feet it has only been 1 1/2 months since the final treatment. The nodules in my feet don't hurt as often, only 3 or 4 times a day I get sharp pains that last 5 minutes or so. A huge improvement.

Just curious if anyone else had this symptom? I also have another weird anomaly, I can't sleep with covers over my feet. Even on cold nights camping when it is 20 degrees outside. My feet get very hot and feel like they are burning up.

Terry Sentinella

11/17/10 18:26
Larry 
11/17/10 18:26
Larry 
Re: Twitchy/Achy Feet at Night/Ledderhose

Sentinella:
I have had twitchy feet at night for about 10 years. Sometimes so bad I can't sleep or I wake my wife up because my feet and legs violently jerk for no reason.

I just found out in June I have Ledderhose in both feet and Duputrens in my left hand (have probably had it for 2 years, but didn't know what it was, I was misdiagnosed a few times). In July, August and September I went through Radiotherapy for my left hand and both of my feet. I haven't noticed my feet twitching at night for about 1 month now. Do you know if one of the symptoms of Ledderhose is achy twitchy feet? I assumed I had RLS and just dealt with it since I HATE taking medication.

BTW Radiotherapy seemed to have helped my Duputrens, it's been 4 months since the treatment, the nodule has softened, the pain has almost subsided, and the tightness is GONE. As for my feet it has only been 1 1/2 months since the final treatment. The nodules in my feet don't hurt as often, only 3 or 4 times a day I get sharp pains that last 5 minutes or so. A huge improvement.

Just curious if anyone else had this symptom? I also have another weird anomaly, I can't sleep with covers over my feet. Even on cold nights camping when it is 20 degrees outside. My feet get very hot and feel like they are burning up.

Terry Sentinella

Terry, where have you received radiotherapy ? and Why are you sure that you have not Dupuytren in your right hand ?
Would like to know, how you got the advise to go for radiotherapy ? Just thru this Forum ?? Thx, Larry

11/18/10 16:14
Sentinella 
11/18/10 16:14
Sentinella 
Re: Twitchy/Achy Feet at Night/Ledderhose

Larry;

I received my treatment at Cancer Care Center At United General Hospital; 2000 Hospital Drive: Sedro Woolley, WA 98284. Dr. Nick Muff was the Radiologist.

At this time I don't have any nodules or a cord in my right hand. I do however have a small callus on my right hand in the same spot as the nodule is on my left hand. I think in the next few years I will develop DC there as well since I have DC, LH, and Garrods Pads on both feet and my left hand. I am also 46, seems kind of young for this. I have 2 other relatives that have DC and LH. My brother a year older than me, he has it much worse then me. My uncle also has DC, he didn't start showing signs of the desease until he was 60 years old, much later than me.

11/19/10 01:21
Larry 
11/19/10 01:21
Larry 
Re: Twitchy/Achy Feet at Night/Ledderhose

Sentinella:
Larry;

I received my treatment at Cancer Care Center At United General Hospital; 2000 Hospital Drive: Sedro Woolley, WA 98284. Dr. Nick Muff was the Radiologist.

At this time I don't have any nodules or a cord in my right hand. I do however have a small callus on my right hand in the same spot as the nodule is on my left hand. I think in the next few years I will develop DC there as well since I have DC, LH, and Garrods Pads on both feet and my left hand. I am also 46, seems kind of young for this. I have 2 other relatives that have DC and LH. My brother a year older than me, he has it much worse then me. My uncle also has DC, he didn't start showing signs of the desease until he was 60 years old, much later than me.

Is Dr. Muff a long-term experienced doctor, who examines both hands and feet as well ?
Has he used the "German" or "European" concept to irradiate ? Electrons or Photons ?

Is it a good a advice to send new patients to him ? Lots of questions . please respond, Larry

Edited 11/19/10 01:22

11/19/10 16:18
Sentinella 
11/19/10 16:18
Sentinella 
Re: Twitchy/Achy Feet at Night/Ledderhose

He is a long term experienced Radiologist. He deals mostly with Cancer Patients. He has been practicing 28 years. I was his 1st DS and LD patient. He used electron beams, 30gu (???) for 5 days in a row, 5 weeks later a second round of treatments. He used the recommended dosage and treatment from Dr. Kline in Boise ID.

I had a hard time finding a place to treat my condition in the community I live in. As most everyone on this list has. I have a very good friend who is a doctor (Dr. Robert Jacobsen - Burlington WA). He questioned my judgement to have radiation performed until I sent him info from the Duputrens online site. He then talked to Dr. Kline for me and convinced Dr. Muff to work with me. I had to have a referral from a Dr. to have radiation done.

I found out the procedure medical codes Dr. Muff used for insurance purposes, called my insurance and verified they would pay for the treatments from there everything went smoothly.

As for recommending him to others: I thought he did a great job, very professional and followed the protocol set forth by Dr. Kline. There are very few Dr's in the USA that even know Radiation is an option for DS and LD. Most Radiologists should know or have heard of it if they read their professional journals. In September a very good DS case using radiation was published in a leading Radiology Journal. The Radiologist Tech showed me the article the last day of my treatment. It is a slow process getting the information out to Dr's and Radiologists but it is happening.

Terry Sentinella

11/20/10 06:28
Larry 
11/20/10 06:28
Larry 
Re: Twitchy/Achy Feet at Night/Ledderhose

Sentinella:

Soo ............ He is a long term experienced Radiologist. He deals mostly with Cancer Patients.
He has been practicing 28 years. I was his 1st DS and LD patient. ................

Terry Sentinella


THX Terry, for your detailed report and your knowledge about insuarance matters.
Very good that you had your treatment done properly and I hope you are well !

But is this experience : you are the 1st case ?

Aren't you the first bunny in a personal trial paving the road for the doctor ?
In my opinion EXPERIENCE means they really know the outcome from their own patients
over years ... May be I am wrong : I would have more CONFIDENCE! Larry

11/20/10 23:50
flojo 
11/20/10 23:50
flojo 
Re: Twitchy/Achy Feet at Night/Ledderhose

@ Terry, Do you have the title and date of the journal/magazine that published the article about RT for Dupuytren's? It would be interesting to read it.

@Larry, While Dr. T did have some experience when I first went to him, he had nothing like the experience some of the German docs have. Nevertheless, I would not hesitate to go to someone who has years of experience with radiation for cancer. They have to know their stuff even more - all different kinds of cancer, in all parts of the body, all stages of the disease, etc. To me, if they could treat my cancer if I had one, they could certainly treat my Dups. Others have found their own radiologist near where they live and have reported success on this site. I understand your concern though, but there is nothing "typical" about Dupuytren's anyway, so any doctor is almost at square one with each patient with unpredictable Dupuytren's.
That unpredictability is what drives us all nuts and leaves us feeling a little uncertain even when we finally make a decision after doing the research. That's what each of us has to do in the end - research, make the best decision we can then go for it. Doing nothing works for some, but if it is active, doing nothing wasn't an option for me.

11/21/10 18:34
Issleib2

not registered

11/21/10 18:34
Issleib2

not registered

Re: Twitchy/Achy Feet at Night/Ledderhose

There has to be a first time for each physician if we really want this become generally available so people who can't travel have access. I was the first for my Physicians over 4 years ago now. I had both hands and both feet done with excellent results. They didn't know any other physicians who were doing it and just read the literature.

11/30/10 16:38
Sentinella 
11/30/10 16:38
Sentinella 
Re: Twitchy/Achy Feet at Night/Ledderhose

I agree I was his "Bunny" in regards to treating Dups. He is one of the best Cancer Radiologists in the area so he understands his job and was able to find out the proper treatment. The Techs that actually did the work told me they have all heard of doing Radiation on Dups and knew the proper treatment, although they had never done it, they were more than happy to use their training on me. Does this make me nervous? Not really, everything I've read about treatments from case studies online and questioning the radiologist and techs, I felt they were giving me the same treatment I would get at a clinic with an experienced Dup Radiologist. These folks are very professional, all they they do is radiation, so they know their stuff!
I searched high and low for someone that could treat my hand and feet while the Dups and Ledderhose was still in an early stage. Looking at the pictures of people with advanced stages of Dups and Ledderhose kind of forced me to search even harder than I normally would have. I wanted to kick this thing in the butt while they were small nodules and in the growth stage. I think it worked. The "nervy" achy feelings in my hand and both feet have all but dissappeared. I just looked at the nodule on my left foot, it looks like it is about 1/2 the size it was prior to radiation. I do have some serious dry patches of skin in the arch of my feet but I can live with that as long as my feet don't ache and hurt.

I run a lot of marathons and ultramarathons. I've ran 20 so far this year. 6 of these runs were 100 mile events. I am also fairly competitive. I won 1 of the 100 mile events and placed in the top 20 overall in all of them. Running is a big part of my life so keeping my feet healthy and injury free is of the upmost importance to me. I plan on running the hardest road race in the world this next summer, July 2011, if I get in. It is called Badwater, the race runs from Death Valley to the portals of Mt. Whitney.

Thanks for all your comments Terry Sentinella

11/30/10 18:53
MolotoW

not registered

11/30/10 18:53
MolotoW

not registered

Being a "Bunny" for Radiation ...

Sentinella:
I agree I was his "Bunny" in regards to treating Dups.

I run a lot of marathons and ultramarathons. I've ran 20 so far this year. 6 of these runs were 100 mile events. I am also fairly competitive. I won 1 of the 100 mile events and placed in the top 20 overall in all of them. Running is a big part of my life so keeping my feet healthy and injury free is of the upmost importance to me. I plan on running the hardest road race in the world this next summer, July 2011, if I get in. It is called Badwater, the race runs from Death Valley to the portals of Mt. Whitney.

Thanks for all your comments Terry Sentinella

Nice TERRY, looking at you as a "BUNNY" running in BADWATER
and getting GRILLED in SUN IRRADIATION passing the DEATH VALLEY

... you are definitevely a SURVIVOR, who has earned his bones in this
strange world !! Keep alive, otherwise RADIATION THERAPY has failed

another Runner with "Ledds" , MolotoW

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Sentinella   Radiologist   Running   unpredictability   medication   treatment   insurance   Radiotherapy   Badwater   ultramarathons   congratulations   nodules   Twitchy   radiation   treatments   experience   information   Ledderhose   Ultramarathon   pre-authorization