Re: Polio/Post-polio question

[Guest guest]

I find the polio/tcs discussion interesting. My uncle (Dad's brother) is 76

and has 'so called' polio/post polio, all his life. He has many of the same

symptoms Kathy mentioned that we do. This group talked about this a few

years ago, so at a family gathering a few years ago I asked him if he was

sure he had polio. We talked about the similarities, heredity, etc. He said

as far as he knew he had polio but at age 74 he was not interested in

exploring it any further. Many of you that have been on the list for awhile

have read of us discussing the NTD (Neural Tube Defect) study being done at

Duke University. I am a participant as well as V on this list. I did

put my Uncles medical history regarding the polio on the form but I do not

know if they ever sent him a questionnaire and blood test kit, he or his

wife have never mentioned it.

Rick

At 04:36 PM 8/20/04 -0400, Katheen Moulton wrote:

>Hello:

>

>There have what I consider, quite a few people over the years who have said

>they were diagnosed in the beginning with polio/post polio. My husband's

>aunt also has this diagnosis, but walks like many do with spina bifida or

>lipomeningocele (you know....the hip kind of pushes out to one side much

>further than it should when a leg is pushed forward to walk.) She uses

>Canadian crutches and also has some other problems that are similar to those

>with Lipo.

>

>I've always wondered. If you are/were diagnosed with polio/post-polio, how

>was the diagnosis made or rather, what did they use to base their diagnosis

>on? Is there a blood test or is more or less they rule many things out and

>what you're left with is a Polio diagnosis? I've often wondered if I should

>bring up neural tube defects to her, because with the polio/post diagnosis,

>no one does anything for her and I can't help but wonder if there is

>something else wrong, if they could help her somehow.

>

>Thanks,

>

>Kathy

>co-owner and co-moderator tethered spinal cord group

> Me too! just had the surgery! Re: New to group, would like

>surgery info

>

>

> >

> > How interesting. I just had the surgery in November. I

> > will tell you more about it when I have more time,( I

> > am at work now.) I was diagnosed lipomyelomeningocele

> > at age 50. thought I had polio and post polio all that

> > time. Will write again soon.

> > Doris

> > --- sumchyk wrote:

> >

> > > Hi all,

> > >

> > > I have Diastematomyelia, Tethered cord, and Spina

> > > Bifida Occulta. My

> > > neurosurgeon, Dr. ph Cusick has scheduled my

> > > surgery for the

> > > middle of September. Unfortunately, at this point I

> > > have few details

> > > about the surgery except the hope when the remove

> > > the boney septum

> > > causing my spinal cord to separate, the cord will

> > > become untethered.

> > >

> > > How long were any of you in the hopsital? How long

> > > out of work? How

> > > painful was it immeidately after the operation.. 2

> > > weeks. Would love

> > > to here some first person accounts.

> > >

> > > By the way, I am 47 years old, have had 5 children

> > > including a set of

> > > twins.. all naturally I might add. Go figure, eh?

> > > I wasn't

> > > diagnosed properly until March of this year.

> > > Before, doctors were

> > > treating me for polio/post polio.. until I had an

> > > MRI!

> > >

> > > Sumchyk

[Guest guest]

I'm also in the study as are all of our children, my husband, my sister, her

family, and my dad (just before he died they were able to get a sample from

him.) I haven't heard boo from Duke though and they said they'd send out a

yearly letter. Anyone else in the study heard anything from them?

Kathy PS- If anyone is interested in joining their study, go to Duke

University (via a search engine would be fine) then look for medical studies

(how I found it) and then look at their list. On the list it used to say if

the study was closed or open. They were so desperate for people to join,

they actually flew someone from Duke to Maine to draw our blood.

Me too! just had the surgery! Re: New to group, would like

> >surgery info

> >

> >

> > >

> > > How interesting. I just had the surgery in November. I

> > > will tell you more about it when I have more time,( I

> > > am at work now.) I was diagnosed lipomyelomeningocele

> > > at age 50. thought I had polio and post polio all that

> > > time. Will write again soon.

> > > Doris

> > > --- sumchyk wrote:

> > >

> > > > Hi all,

> > > >

> > > > I have Diastematomyelia, Tethered cord, and Spina

> > > > Bifida Occulta. My

> > > > neurosurgeon, Dr. ph Cusick has scheduled my

> > > > surgery for the

> > > > middle of September. Unfortunately, at this point I

> > > > have few details

> > > > about the surgery except the hope when the remove

> > > > the boney septum

> > > > causing my spinal cord to separate, the cord will

> > > > become untethered.

> > > >

> > > > How long were any of you in the hopsital? How long

> > > > out of work? How

> > > > painful was it immeidately after the operation.. 2

> > > > weeks. Would love

> > > > to here some first person accounts.

> > > >

> > > > By the way, I am 47 years old, have had 5 children

> > > > including a set of

> > > > twins.. all naturally I might add. Go figure, eh?

> > > > I wasn't

> > > > diagnosed properly until March of this year.

> > > > Before, doctors were

> > > > treating me for polio/post polio.. until I had an

> > > > MRI!

> > > >

> > > > Sumchyk

>

>

>

[Guest guest]

> Hello:

>

> I've always wondered. If you are/were diagnosed with polio/post-

polio, how

> was the diagnosis made or rather, what did they use to base their

diagnosis

Hi all,

In my case, I did not walk by age 2 and our local shoeman suggested

to my mother she take me to an orthopedic surgeon. My right foot

turned in considerably and my mother reported a huge amount of infant

crying during the first years of my life. Based on my foot, the

muscle atrophy on the right side, and my mother's report -- I was

diagnosed as a 'missed' polio case. Remember, there were no MRI's

back then and they could trace polio exposure (one of my Godparents).

Once 'diagnosed' most doctors simply accepted the previous doctor's

opinion. This is despite the fact I actually have a significant

spinal dimple you could lose a golf pencil in :-) I have had endless

problems all my life and often told 'there is nothing that can be

done' or 'learn to live with it'.

When new problems started as I got older, I was told I had post-polio

syndrome. The very first person to suggest it was not polio was my

obstetrician at Northwestern Hospital who asked me how many problems

I had as a result of Spina Bifida (he spotted the dimple and knew

what it was).

I cannot guess how many 'post-polio' folks out there actually had

Spina Bifida but in the US, it would have to be people age 47 or

older (1957 was when mass immunizations began).

Sumchyk

[Guest guest]

I did/do not have Polio or Post-Polio. However, I did want to say that when

I was having problems before my last Detethering, one of my Dr.'s said what

I was experiencing was what looks like Post-Polio. So, what that makes me

think is that if I had an unexperienced Dr. they would have just gone with

that, and not looked further, even though I did not have Polio. The Symptoms

are that similar.

So, it sounds like to me the Diagnosis could very well be right. But it

never hurts to get a second Opinion.

Me

Nebraska, USA

mymocha@...

>

> There have what I consider, quite a few people over the years who have

> said

> they were diagnosed in the beginning with polio/post polio. My husband's

> aunt also has this diagnosis, but walks like many do with spina bifida or

> lipomeningocele (you know....the hip kind of pushes out to one side much

> further than it should when a leg is pushed forward to walk.) She uses

> Canadian crutches and also has some other problems that are similar to

> those

> with Lipo.

>

> I've always wondered. If you are/were diagnosed with polio/post-polio,

> how

> was the diagnosis made or rather, what did they use to base their

> diagnosis

> on? Is there a blood test or is more or less they rule many things out

> and

> what you're left with is a Polio diagnosis? I've often wondered if I

> should

> bring up neural tube defects to her, because with the polio/post

> diagnosis,

> no one does anything for her and I can't help but wonder if there is

> something else wrong, if they could help her somehow.

>