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Question for Seph and anyone else with very long term LD
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01/24/16 02:12
dpjcrfsh 
01/24/16 02:12
dpjcrfsh 
Question for Seph and anyone else with very long term LD

I was very encouraged reading some of Seph's accounts on his feet. It sounds like he got a node on each foot and then perhaps didn't get any more nodes in 20-30 years. Is that true or did you occasionally get additional nodes. What is your total LD history, Seph?

I'm interesting in hearing cases histories of anyone else here with very long term LD.

In my case I had a node appear on each foot about 8 years ago and then 1-2 years ago had two more nodes show up on one foot and three on the other, with probable additional growth in the form of a very thin sheet of thickened fascia around the original nodes. As mention before, I still have only limited pain and no functional impairment aside from it being painful to walk on gravel barefooted. It seems like my condition is stable for now. During the past two years when the new stuff showed up I had been taking very large amounts of vitamin C and have taken Glucosame regularly for years, both of which are possibly implicated in DD and LD. I have since completely stopped supplements of both. In addition, I had a broken toe which required surgery 2 years ago, which very much could have been a factor. I'm hoping that by avoiding more trauma and not taking these supplements, that maybe I can coast this LD into old age without much more progression.

01/24/16 07:16
Seph 
01/24/16 07:16
Seph 

Re: Question for Seph and anyone else with very long term LD

Hi dpjcrfsh; In my case the LD needs to be put into context. I have now had LD for more than 45 years but have only had a correct diagnosis for 25 years. I didn't know there was a connection between what was happening with my hand and my feet for 20 years.

First started with LD. As a young teenager I found my feet hurt when I first started moving in the morning. "Context" - I did not wear shoes until I went to highschool. For me the biggest issue when I was 11/12 was the problem of running across a field covered in frost to get to junior school with bare feet when running was painful.

At some point it was noticed that I had a lump under one foot and doctors operated to remove the lump. Not sure what age but it was before I started driving a car and I got my drivers license just after I turned 15.

Within a couple of years lumps reappeared on the site of the operation and over time this formed into a mass that fills most of the arch under that foot. Before I was twenty a single lump formed in the arch of the other foot. Followed by DD in my left hand and then my right. That lump has not progressed but I do now have a mass forming behind the toes on that foot that I think is LD.

In my late teens through my twenties I did a bit of running but I would get pins and needles in my feet after 5-6km and would loose feeling completely after 8km or so. Felt like I was running on blocks of wood. This may have been LD related or maybe not. Through this period I also played a lot of squash and in the weekends played field hockey.

From my late teens to early 30's the LD was painful and caused blisters that I popped and treated with methylated spirits. Eventually the pain went away and the surface over the DD lumps hardened to the consistency of my heals. They have remained that way. I am aware of the LD lumps but they no longer cause me any discomfort. I do regularly get cramp in my feet but once again I don't know that this is LD related.

Importantly I give my feet no special treatment. I am active every day with gym, tennis or cycling and sometimes more than one. When at our holiday place in NZ I wear bare feet most of the time often walking roads and rocky surfaces. Shoes required for restaurants only. When home in Sydney I wear normal footwear without adjustment for LD.

Over time I have broken a couple of toes (One now a bit deformed) and I have knocked off a few toe nails (Not fun). I don't think it would have helped had I protected my feet.

My view is that the pain is caused by the LD lumps pressing on nerves and tendons. Push through and they will eventually lengthen and the pain goes away.

Hope that all makes sense.

Seph

01/24/16 18:19
dpjcrfsh 
01/24/16 18:19
dpjcrfsh 
Re: Question for Seph and anyone else with very long term LD

Thanks very good info. Again it sounds like LD does not necessarily threaten one's quality of life. It's interesting that you have a mass forming behind the toes on one foot. I assume it's not on the weight bearing part of the foot (the ball)? Is the mass under the arch of your foot thick enough that there' pressure on the sole of the shoe when you walk? I would be interesting if you could have significant pressure and it still not be a big problem.

When talking with Dr. S in Hamburg last week, he mentioned that rarely LD can invade the tendon sheath. Do you have any idea if that's happened in your case? Don't even know what the symptoms would be.

Dr. S said my LD is stage 3. Stage 1 is a single node, Stage 2 is multiple nodes, stage 3 has skin involvement and in stage 4 there is gait alteration. My skin involvement is such that it's a little red above the nodes. I find it a bit odd that I would be considered stage 3 when it seems like the disease has little impact on my life so far. Stage 3 sounds like it should be pretty advanced.

I'm starting to believe that exercise may be a big key to management of LD and DD for unclear reasons. Maybe all of your exercising has helped you live well with the disease for so long.

01/24/16 23:05
Seph 
01/24/16 23:05
Seph 

Re: Question for Seph and anyone else with very long term LD

The mass forming behind the toes is not on the ball or behind my big toe. It runs across immediately behind the middle three toes. Not painful but I know its there when I push forward with that foot.

The lump in the arch of one foot and mass in the arch of the other both press on the shoes as the are roughly level with my heal and the ball. That's the reason I used to get blisters and lot of pain. As I keep saying to many people this is where you need to push through. Park the pain and go for it. The skin covering my LD is now like leather and the tendons/nerves have obviously adjusted or lengthened such that I have no pain.

You say that you skin is red above the nodes. Isn't it likely that this is just irritation caused by the nodes rubbing on things as you walk. Certainly that was the case for me.

My view is the exercise is key to being healthy so I would not back off even if there was evidence that it was aggravating my DD or LD.

01/27/16 14:00
dpjcrfsh 
01/27/16 14:00
dpjcrfsh 
Re: Question for Seph and anyone else with very long term LD

I don't feel my nodes rub at all that I can tell, so I don't think they are red for that reason. And I would describe them as only slightly red. After taking a long hot shower, they are more noticeably red.

I'd love to see photos of you feet if you have any.

03/03/16 13:19
Seph 
03/03/16 13:19
Seph 

Re: Question for Seph and anyone else with very long term LD

dpjcrfsh:
I don't feel my nodes rub at all that I can tell, so I don't think they are red for that reason. And I would describe them as only slightly red. After taking a long hot shower, they are more noticeably red.

I'd love to see photos of you feet if you have any.


Apologies dpjcrfsh I had intended to respond to you request for foot photo's but forgot. Attached images of 61 year old feet with 40+ of LD experience.

Attachment
SG left Foot.jpg SG left Foot.jpg (23x)

Mime-Type: image/jpeg, 447 kB

SG Right Foot.jpg SG Right Foot.jpg (23x)

Mime-Type: image/jpeg, 485 kB

03/03/16 13:29
Seph 
03/03/16 13:29
Seph 

Re: Question for Seph and anyone else with very long term LD

NB Photo of right foot shows scar from surgery 47 years ago.

03/06/16 22:06
dpjcrfsh 
03/06/16 22:06
dpjcrfsh 
Re: Question for Seph and anyone else with very long term LD

Thanks Seph!

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