don't know what to do!

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

Moderators: Birdwatcher, jenjay, Cassie, patoco, Senior Moderators

don't know what to do!

Postby angel » Sat Feb 10, 2007 5:12 pm

Hello me again.
Further to my last post about my letter from the Prof I am still feeling very frustrated! I feel I am harping on but I still feel that I did not get to show the prof all my swellings. My right leg/hip fill pretty heavy with fluid, my back ha still got stuff in it and my face has been slightly swollen. I just feel that I still have this lymphatic problem, and yes it might not be medically that bad, to me it is. I just feel just because my swelling goes up and own I don't know why it can't be pure le. I am not disrespecting the prof, and I know my lymph scan was clear, but I just feel the prof is used to seeing people who are alot worse than myself and he says them at much later and much more serous stage of swelling. My limb does go hard from time to time and the only thing that seems to really soften it is mld. I have all the problems of odema, hardness, rippling, tirdeness,heaviness, pain etc.
I just feel to be told I have a syndrome but not which one is very difficult. I just don't know what the future holds. Yes , you could say it is good that I don't ahve pure le, but the fact is I am still stuck with this swelling that unfortunately did not present it itself fully on my appointment day. it is like I never went through with all the pain with my face etc. Sorry to go on but I just feel pretty ill sometimes with this condition and with no guidance apart from the support of my angel mld therapist.
I am still waiting for the appointment for my mri.
Posts: 77
Joined: Fri Dec 29, 2006 8:15 am
Location: Scotland

Postby patoco » Sun Feb 11, 2007 4:20 am

Hi Angel

Trust me, I feel your frustration :cry: :x

I have been tearing my hair out trying to figure somewhere to get some info for you. Did you get a chance to browse through those syndrome sections I spoke of before?

I know you mean no disrespect to Dr. Mortimer, but frankly I agree with you. I feel very much disappointed this is all you received. My hunch (from my experience) is that he just doesn't know and this is his way of saving face. I wish he would be more forthright with you.

The point is to treat LE before it becomes bad as others. See if you at least can get a referral to a clinic for management treatment.

I'll keep looking as well...haven't forgotten you. Just with all the hospitalization, surgery etc I have gone through my energy and stamina is still pretty dismal.

Don't give up!! :!: :!: :!: :!:

:mrgreen: Pat O
User avatar
Site Admin
Posts: 2175
Joined: Thu Jun 08, 2006 9:07 pm

Postby angel » Sun Feb 11, 2007 10:10 am

thankyou so much Pat!
I am very grateful for all your help and support. I appreciate that your are not feeling your best just now and so I appreciate your efforts even more.
I did read the info on syndromes thanks. I have read bits and pieces which sound like me but nothing concrete.
I am just so puzzled by the prof. letter which said that if my swelling goes up and down it can't be le-yet as I understand early stage le goes up and down. Yet my hip is always swollen.Just feel I am being left by the medical profession to get ill enough for them to take notice. If I didn't have my lovely mld therapist I don't know what I'd do. There are no clinics where I live unfortunately so I have to rely on my mld therapist for help. I will be seeing here this friday coming.
I just don't want to be in the position in 10 yrs time wishing that the docs had done more when I was in early stage le.
thanks again Pat.
Take care!
Posts: 77
Joined: Fri Dec 29, 2006 8:15 am
Location: Scotland

Postby Daisy » Tue Feb 13, 2007 12:06 am

It took me 18 years before a doctor finally gave me a name for why my ankles (then calves, then thighs) would swell and go back down. In fact it's in the definition of stage one that the swelling goes down at night.

If certain things can make the swelling worse (heat, hot tubs) then surely there are times when it is better.

Checking here is a great first step - learn what you can so YOU can educate HIM. Eventually they'll accept that you have LE and will (it is hoped) take the steps to get you the treatment you need).
Posts: 19
Joined: Thu Feb 08, 2007 8:07 pm

Postby silkie » Wed Feb 14, 2007 1:21 pm


Many years frpm puberty till i was finally diagnosed at 52 my legs went up and down and my fingers and my arm

they put it down to fluid retention because of my weight

dont give up

I was finaally diagnosed and helped not by some doctor but an experienced lymphedema practioner at St annes hospice in Manchester

She was amazing not only taught me how to do mld and do self care but she understood the self doubt and lack of esteem the years of disbelief can leave you with. Look around angel check try and find a lymph paractioner that can help you there worth their weight in gold


User avatar
Posts: 383
Joined: Fri Jun 09, 2006 4:43 pm
Location: England

Postby angel » Thu Feb 15, 2007 11:38 am

thanks Silkie!
It's just all so frustrating. It is not normal to be swollen the way I am and I am just expected to accept it . Still waiting for my mri.
Posts: 77
Joined: Fri Dec 29, 2006 8:15 am
Location: Scotland

Postby silkie » Thu Feb 15, 2007 1:50 pm

Hi Angel,

No it isnt the usual thing limbs that swell .

i was actually told it was just my shape the big legs live with it

I did for a long time think its just me .and when i asked why cant i do something there was no one that seemed to listen or want to know

No doctors that believed but i know it was iver half a life time but
I was finally listened to and given a name for this and a way to help myself i wasnt paranoid

Now thanks to the interent and amazing people like Pat O'connor
and others that to know how frustarating and unfair it is to have this condition and no help Well we are all supporting each other and
slowly lymphedema is getting researched and recognised its slow process and still a battle but were getting there and out children and grandchildren will not have to experience the ignorance and indifference we have and our grandparents

hang in there good look with the MRI i hope it helps with the answers

User avatar
Posts: 383
Joined: Fri Jun 09, 2006 4:43 pm
Location: England

Return to Lymphedema Personal stories

Who is online

Users browsing this forum: No registered users and 21 guests