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Lymphedema in legs

Posted by mariwy59 @mariwy59, Aug 2, 2017

I was diagnosed with lympedema in 2007. Due to unforseen circumstances I am now on disability so i cant stand for long periods of time without excruciating pain. I have to change so many things in my daily life but one thing that is bothering me is the pain I feel all the time .Try to do things to put in the back of my mind. My condition seems to be getting worse with the stiffness . I watch sit and fit on TV when can which helps some but the thought of not being able to walk at all has me terrified.

Interested in more discussions like this? Go to the Lymphedema Support Group.

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 4, 2018

Sitting here at Mayo waiting for scan 2 of 3 for the Lymphoscintigram. Had the injection between the toes which surprised me at 7:30 am then walked up a floor and got to see where my daughter works. Then had to keep moving until I had the first scan. Back up and supposed to keep moving - hard for an old man :-). Down to the cafeteria for coffee and a cookie. Then made a big mistake. I sat in a comfy chair and proceeded to dump a hot cup of coffee on my lap. Can’t believe I kept my composure and didn’t yell out.

Thankfully I wore some new loose fit dark blue jeans. Ate the cookie, drank the rest of the coffee and started moving again. Got all the way to the nice quiet area between the buildings and decided to stop and enjoy the view- beautiful today.

Time to get going again. ~ John
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thankful | @thankful | May 27, 2018
In reply to @johnbishop "I thought I would take a few minutes to give you all another update as things..." + (show)
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I thought I would take a few minutes to give you all another update as things are moving faster than I expected (color me Happy!). This morning I found a request to setup a CT abdomen scan, a lymphoscintigram and some labs which are required before my consultation with lymphedema specialist. I called the local clinic and setup the appointments, had a blood draw at 10:30 after my coffee break. Got the results back after lunch for the blood draw - kidneys appear to be functioning OK. The CT abdomen scan is setup for May 31st in the afternoon. The big one, the lymphoscintigram is setup for June 4th and pretty much a whole day ordeal - 7:30 am injection of the stuff that makes you glow, 11 am I have the first scan and 2 pm I have the second scan. Then I have the Lymphedema Consultation on June 6th. So hopefully I will know more in the very near future.

I'm also hoping my experience may help others.

John

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@johnbishop- Hoping for Great results John! Hope you don't continue to glow unless it's in our hearts!

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kishanvasekar | @kishanvasekar | May 27, 2018
In reply to @johnbishop "Well, the x-ray results are in for my right foot and ankle but the doctor hasn't..." + (show)
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Well, the x-ray results are in for my right foot and ankle but the doctor hasn't contacted me yet so I'm not sure if I still will need the ultrasound of the right leg.

Marked soft tissue swelling about the right ankle. Mild degenerative narrowing of the ankle mortise medially and laterally. Scattered degenerative changes throughout the right ankle, mid and hindfoot and right forefoot most marked at the first MTP joint. Right clot deformities. Tiny plantar and Achilles calcaneal spurs.

Not sure what "right clot deformities" are though so I'm waiting to talk with the doctor and ask him. In the mean time, I do some extra exercises in the morning and during the day to see if I can help the lymphedema - toe clenches, ankle pumps, gluteal squeezes and a few more.

John

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I used for 5 years after heart attack.Now practically stopped.Regular Exercise , Yoga , Meditation and Diet control is key to my miracle recovery.

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John, Volunteer Mentor | @johnbishop | May 25, 2018
In reply to @johnbishop "I thought I would take a few minutes to give you all another update as things..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

I thought I would take a few minutes to give you all another update as things are moving faster than I expected (color me Happy!). This morning I found a request to setup a CT abdomen scan, a lymphoscintigram and some labs which are required before my consultation with lymphedema specialist. I called the local clinic and setup the appointments, had a blood draw at 10:30 after my coffee break. Got the results back after lunch for the blood draw - kidneys appear to be functioning OK. The CT abdomen scan is setup for May 31st in the afternoon. The big one, the lymphoscintigram is setup for June 4th and pretty much a whole day ordeal - 7:30 am injection of the stuff that makes you glow, 11 am I have the first scan and 2 pm I have the second scan. Then I have the Lymphedema Consultation on June 6th. So hopefully I will know more in the very near future.

I'm also hoping my experience may help others.

John

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Thanks Rosemary. I really appreciate it.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 25, 2018
In reply to @johnbishop "I thought I would take a few minutes to give you all another update as things..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

I thought I would take a few minutes to give you all another update as things are moving faster than I expected (color me Happy!). This morning I found a request to setup a CT abdomen scan, a lymphoscintigram and some labs which are required before my consultation with lymphedema specialist. I called the local clinic and setup the appointments, had a blood draw at 10:30 after my coffee break. Got the results back after lunch for the blood draw - kidneys appear to be functioning OK. The CT abdomen scan is setup for May 31st in the afternoon. The big one, the lymphoscintigram is setup for June 4th and pretty much a whole day ordeal - 7:30 am injection of the stuff that makes you glow, 11 am I have the first scan and 2 pm I have the second scan. Then I have the Lymphedema Consultation on June 6th. So hopefully I will know more in the very near future.

I'm also hoping my experience may help others.

John

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@johnbishop, I’m dropping in to add my “hope everything goes ok” and that you learn what is going on.
Rosemary

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Teresa, Volunteer Mentor | @hopeful33250 | May 25, 2018
In reply to @johnbishop "I thought I would take a few minutes to give you all another update as things..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

I thought I would take a few minutes to give you all another update as things are moving faster than I expected (color me Happy!). This morning I found a request to setup a CT abdomen scan, a lymphoscintigram and some labs which are required before my consultation with lymphedema specialist. I called the local clinic and setup the appointments, had a blood draw at 10:30 after my coffee break. Got the results back after lunch for the blood draw - kidneys appear to be functioning OK. The CT abdomen scan is setup for May 31st in the afternoon. The big one, the lymphoscintigram is setup for June 4th and pretty much a whole day ordeal - 7:30 am injection of the stuff that makes you glow, 11 am I have the first scan and 2 pm I have the second scan. Then I have the Lymphedema Consultation on June 6th. So hopefully I will know more in the very near future.

I'm also hoping my experience may help others.

John

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@johnbishop Hi John: I am glad that you are moving forward with testing. That is good news about the kidney functioning, I'm glad to hear that. Thank you for keeping us all posted, I'm praying for you. Yes, this will be another experience to add to your Mentor knowledge base. Wishing you well. Teresa

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lioness | @lioness | May 25, 2018
In reply to @colleen00 "John, sounds like you have a very busy schedule the next few weeks. Good luck, my..." + (show)
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John, sounds like you have a very busy schedule the next few weeks. Good luck, my prayers are with you.

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@johnbishop yes it can it's the not knowing that's frustrating hang in there once you find out and get on treatment things will work out have faith

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John, Volunteer Mentor | @johnbishop | May 25, 2018
In reply to @colleen00 "John, sounds like you have a very busy schedule the next few weeks. Good luck, my..." + (show)
Profile picture for colleen00 @colleen00

John, sounds like you have a very busy schedule the next few weeks. Good luck, my prayers are with you.

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Thanks @colleen00 and @lioness. I'm hoping they find the cause and I'm able to come out of it with a treatment plan. I know it's pretty much a lifelong thing but with proper treatment it can be controlled.

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lioness | @lioness | May 25, 2018
In reply to @johnbishop "I thought I would take a few minutes to give you all another update as things..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

I thought I would take a few minutes to give you all another update as things are moving faster than I expected (color me Happy!). This morning I found a request to setup a CT abdomen scan, a lymphoscintigram and some labs which are required before my consultation with lymphedema specialist. I called the local clinic and setup the appointments, had a blood draw at 10:30 after my coffee break. Got the results back after lunch for the blood draw - kidneys appear to be functioning OK. The CT abdomen scan is setup for May 31st in the afternoon. The big one, the lymphoscintigram is setup for June 4th and pretty much a whole day ordeal - 7:30 am injection of the stuff that makes you glow, 11 am I have the first scan and 2 pm I have the second scan. Then I have the Lymphedema Consultation on June 6th. So hopefully I will know more in the very near future.

I'm also hoping my experience may help others.

John

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@johnbishop Thank for the update John. I wish you well hope everything goes o.k.

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colleen00 | @colleen00 | May 25, 2018

John, sounds like you have a very busy schedule the next few weeks. Good luck, my prayers are with you.

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