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Re: New to group.

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Hi :

I am fairly new to the group also. I haven't been officially

diagnosed as of yet.My doc is waiting until my insurance goes into

effect the end of the month. He is a rheumatologist and I have been

seeing him for a year for fibromyalgia. I now have all the symptoms

he says of rheumatoid arthritis in my hands and feet and possibly my

lower back. He will do blood work when I see him next month to

confirm the diagnosis. Anyway, I too have poor circulation in my

legs and feet. My right foot swells constantly and stays cold now

and turns purple. I also possibly have a Morton's neuroma in my

right foot. The rheumatologist says I have tendonitis in the right

foot that swells all the time and is a result or side effect of RA.

Anyway my big belly also is causing lack of circulation in my feet.

I type all day at a computer so I try to make myself get up and walk

every 30 minutes or so. My feet don't go numb they just stay cold.

I'll hopefully find out what to do about it next month.

> Hi,

>

> I'm and new to the group. Quick question - Does anyone

have

> a problem with the circulation in their legs? When I sit or stand

in

> one position for more than a minute or two my feet turn purple and

go

> to sleep and sometimes numb! Any info would be a great help.

>

>

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  • 3 years later...
Guest guest

Hello Ileana, Welcome to the group my name is . I am 42 and have BPES and so does my 17 year old son. We are the only two in my BIG family to have this. I am very curious, do you or your husband have BPES or just your two children? It is very rare for two siblings to have BPES unless at least one of the parents do. Restoule, CanadaIleana <ileana.padin@...> wrote: Hi All,My name is Ileana and I am new to this group. I have

two children with BPES and I am so happy that this group exsists! My daughter is 10y/0 and has had four surgeries. Two at Bascom Palmer Eye Institute and two here in Wisconsin. She is going to have another one on the bottom eyelids to lift them up a little more. My son 8y/o has not had surgery yet. I have uploaded some pictures for you all to see under " Family". I look forward to exchanging information and learning from you all.IleanaPort Washington, Wisconsin

We won't tell. Get more on shows you hate to love(and love to hate): TV's Guilty Pleasures list.

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Guest guest

Hi ,

My husband (who has now passed) had BPES and his father as well. I

don't know if his siblings had BPES. It seemed to be passed on from

the father's side of the family.

I will try to post a picture of him as soon as I can.

Nice meeting you,

Ileana

> Hi All,

>

> My name is Ileana and I am new to this group. I have two children

with

> BPES and I am so happy that this group exsists! My daughter is

10y/0

> and has had four surgeries. Two at Bascom Palmer Eye Institute and

two

> here in Wisconsin. She is going to have another one on the bottom

> eyelids to lift them up a little more. My son 8y/o has not had

surgery

> yet.

> I have uploaded some pictures for you all to see under "

> Family " .

> I look forward to exchanging information and learning from you all.

>

> Ileana

> Port Washington, Wisconsin

>

>

>

>

>

>

> ---------------------------------

> We won't tell. Get more on shows you hate to love

> (and love to hate): TV's Guilty Pleasures list.

>

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