Re: Polio/Post-polio question

[Guest guest]

Hi,

I was diagnosed with Polio when 11 and in my forties I was told that I had

Post Polio Syndrome. I did not have polio but have Tethered Cord / Lipoma.

Doctors did not know much about TCS when I was first diagnosed and Polio was

rampant then. It became easier for doctors not to look any further when my

legs became worse over time and tagged it as Post Polio. It took one doctor

to realize that all the symptoms I had (ONE) pointed to me not having Polio

at all.

Loss of sensitivity of the limbs is not a symptom of Polio and I had / have

extensive loss of sensitivity.

In ways I am glad I was diagnosed as I was. It was before Mri's and the

knowledge was not there. I was told by my Neuro that I would possibly ended

in a wheelchair much sooner.

Cherie

A member of

www.spinalcordinjuries.com.au

>

> 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.

> >

>

>

>

>

>

> Not Medical Advice. We Are Not Doctors.

> Need help with the list? Email

kathy@...,michelle@..., rick@...

>

[Guest guest]

>

> Hi,

> I was diagnosed with Polio when 11 and in my forties I was told that I had

> Post Polio Syndrome. I did not have polio but have Tethered Cord / Lipoma.

> Doctors did not know much about TCS when I was first diagnosed and Polio was

> rampant then. It became easier for doctors not to look any further when my

> legs became worse over time and tagged it as Post Polio. It took one doctor

> to realize that all the symptoms I had (ONE)  pointed to me not having Polio

> at all.

> Loss of sensitivity of the limbs is not a symptom of Polio and I had / have

> extensive loss of sensitivity.

> In ways I am glad I was diagnosed as I was. It was before Mri's and the

> knowledge was not there. I was told by my Neuro that I would possibly ended

> in a wheelchair much sooner.

>

> Cherie

> A member of

> www.spinalcordinjuries.com.au

Hi Cherie,

As I have suggested (jokingly .. but perhaps not any more) there are

enough of us out there/here to form our own club.. the 'Formerly diagnosed

polio/post polio patients who really have spinal cord problems " I'm glad

you finally got the correct diagnosis.

I am in the midst of recovering

from surgery and unable to hang out on the Internet for too long yet, but

I too was misdiagnosed. I hope to formulate a plan to get the word out so

needless suffering can be avoided.

{{hugs to all}}

[Guest guest]

I'm more then sure it is possible to have both Conditions.

In saying that though........when I was Symptomatic before my last

Detethering, and they were trying to figure out what it was, they did

mention to me, that if I didn't have a Dr.(s) that knew better, it would be

very possible for me to have been Diagnosed with Post Polio Syndrome......as

the Symptoms are very similar to Tethered Cord. But since I was never

Diagnosed with Polio, and my Dr.'s knew so, that wasn't a possible

Diagnosis.

Me

Nebraska, USA

mymocha@...

> I was diagnosed with Polio when 11 and in my forties I was told that I had

> Post Polio Syndrome. I did not have polio but have Tethered Cord / Lipoma.

> Doctors did not know much about TCS when I was first diagnosed and Polio

> was

> rampant then. It became easier for doctors not to look any further when my

> legs became worse over time and tagged it as Post Polio. It took one

> doctor

> to realize that all the symptoms I had (ONE) pointed to me not having

> Polio

> at all.

> Loss of sensitivity of the limbs is not a symptom of Polio and I had /

> have

> extensive loss of sensitivity.

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