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Tingling in legs with Ledderhose
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01.11.13 22:57
nanshands 
01.11.13 22:57
nanshands 
Tingling in legs with Ledderhose

Hello Everyone,

I'm wondering if anyone that has Ledderhose experiences or has experienced tingling in your lower legs? Not just your feet. If you had RT for LD did it improve or worsen?

At this point in time I don't know if I should view this as a normal symptom of progressive LD or consider a spinal MRI to rule out other possibilities.

Thanks, Nan

02.11.13 16:33
Penny 
02.11.13 16:33
Penny 
Re: Tingling in legs with Ledderhose

Hi Nan,
I wanted to thank you for your last post to me, for the prayers and encouragement. I can't say that I have tingling but I have felt tightness in my lower legs and aching at times (not often though) I haven't contacted Prof S as I can't see another trip to Germany in my future and sometimes I just don't know what to do, so I do nothing, which is not the best way to handle this.
I think RT was a good option for me--the nodules of my feet did stop growing and at the time I went they had been growing rapidly. I just don't know if all the nodules got zapped at that time and I also am not sure if I have new ones or if these were always there (which makes me feel dumb that I don't know) but anyway I don't. It is hard to make these decisions because it seems everyone has different reactions and therefore what to do? I sometimes wish I had paid for a MRI on my feet, just so I would have a base to compare to.
Praying for wisdom for you.
Penny

03.11.13 00:28
nanshands 
03.11.13 00:28
nanshands 
Re: Tingling in legs with Ledderhose

Penny:
Hi Nan,
I wanted to thank you for your last post to me, for the prayers and encouragement. I can't say that I have tingling but I have felt tightness in my lower legs and aching at times (not often though) I haven't contacted Prof S as I can't see another trip to Germany in my future and sometimes I just don't know what to do, so I do nothing, which is not the best way to handle this.
I think RT was a good option for me--the nodules of my feet did stop growing and at the time I went they had been growing rapidly. I just don't know if all the nodules got zapped at that time and I also am not sure if I have new ones or if these were always there (which makes me feel dumb that I don't know) but anyway I don't. It is hard to make these decisions because it seems everyone has different reactions and therefore what to do? I sometimes wish I had paid for a MRI on my feet, just so I would have a base to compare to.
Praying for wisdom for you.
Penny

Hello Penny,

Thank you so much for responding! I can tell by your words how discouraged you are feeling with this disease and what to do. I'm with you! There are many days I feel confused in knowing the best way to contend with this disease. I feel confident and eager to move forward with RT in my hands. But RT to my feet is scaring me, and you are not the only one that has posted some negative, perhaps long term side effects of the RT to the feet. That is not to say there are not many favorable posts too with good results. I think Ledderhose is just a more difficult disease to treat with positive results. I also can't help but wonder if women have more problems with the RT and side effects? Sure seems like it when you read through the posts. Maybe related to hormones, bone and muscle mass, even fat in the feet and hands.

I do know that the pain right now in my feet is pretty bad. It makes those nodules in my hands seem almost insignificant, when just 8 weeks ago the discomfort in my hands was all I had to deal with.

You mentioned the possible value of doing an MRI. Was that an option with Prof. S? I read in an older post that Prof. S did do an MRI on him. I would be open to an MRI on my feet if he offers one, would like to have the additional information before zapping. I am not working with a podiatrist here since my feet took off with nodules shortly after my hands did. I clearly have LD. And, if I am wrong, I'm certain Prof. S will tell me.

I want you to know that your prayers for me as well for wisdom in this means a great deal to me. My faith in God continues to bring me peace and comfort in all of this, frankly the only thing that truly does!

Nan

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