been to see prof.Mortimer!

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been to see prof.Mortimer!

Postby angel » Wed Jan 10, 2007 4:21 pm

hello!
beent to see prof . Mortimer today!
Says I don't have pure le but a syndrome which one of the symptoms is my lymphatics not working properly!
Now quite confused-have all the symptoms of le but not le.
Had the dye injected into my lympahtics very sore!
He says my main lymphatics are fine but is ordering mri for my hip to have at home.
He is still to name this syndrome!
any thoughts appreciated!
angel
 
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Postby silkie » Wed Jan 10, 2007 11:32 pm

Hi Angel

I hate it when i have come away from doctors confused by their
explination. And i'm afraid im not certain what he means

unless (and this is pure guess work) your lymphs are ok but the system is damamged?

bit like roads the roundabouts might work angel but you have to have the roads for the cars to move on. I am not sureif this is what he is suggesting Poor you another wait for your mri

Waiting is the hardest

Huggggggggggg

Silksxxxxxxxxxxxxx
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Postby angel » Thu Jan 11, 2007 1:37 pm

thanks Silkie. I think you might be right!
I just wish that i knew what syndrome I had!
angel
 
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Postby silkie » Thu Jan 11, 2007 2:45 pm

Hi angel

You know i waited so long for someone to tell me i had not self inflicted this

When Denise said " PRIMARY LYMPHEDEMA" it was like i been released

i could get on with my life even with lymph i knew what i was living with and it wasnt my imagination

i really do know how important it is to know it releases you somehow helps you get on with your life
I hope you find out soon hun

Hugggggg

Silksxxxxxxxxxxx
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Postby angel » Sat Jan 13, 2007 5:26 pm

I am just puzzled really. I have lymphatic problems but not pure le-prof. mortimer says I don not have pure le because my swelling in myface goes up and down. My hip is permanently up but my face goes up and down. Got no advice on how to manage any of this. I am told to do whatever makes me feel better. Feeling I don't have pure le but now I am told I have a syndrome but don't know what and I still have my swollen hip! :(
angel
 
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Postby silkie » Sat Jan 13, 2007 6:45 pm

Hi Angel

I don't know if i am typical because i have both

but early in my lymph lip life when no one thought anything of it

my legs and feet would go up and down like yo yo's

they used to say it was the heat, or i sat to near the fire
or water or even shoes to tight i wore grannie shoes

walked to much been on my feet too much

my hands to would swell sausage fingers lol


the pain was growing pains

Maybe early on lymph is up and down, i don't know but i do know that it does as a general rule slowly over years get worse maybe permanant swelling instead of up and down

we are still today learning

Hugssssssssssssss

Silksxxxxxxxxxxx

hang in there



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Postby angel » Sun Jan 14, 2007 11:20 am

thanks silkie!
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