Oh Great! Here we go again.....

[Craig Mattice]

Why am I not surprised?

I was asked by my excellent PCP to see a "real neuro MD" rather than the neuro adult NP i've been seeing since '04. I complied, my NP was not surprised and because my case is so complicated I was assigned a "real neuro MD."

My first visit to him was on Thursday this last week. He is very good, considerate, sharp, and progressive.

Here's the bottom line after a full physical evaluation and review of my chart. Your HSP (Hereditary Spastic Paraplegia) diagnosis is "suspect!" Excuse me? What? :shock:

"I want to go through your new insurance company and try to get a genetic marker test done or we can't verify your HSP diagnosis. This may be worth paying out of pocket." He said this matter of factly. We tried this before, it was considered out of network and at the time I learned the cost was about $3,000 plus travel and expenses. Some how he came up with $600.

I told my wife the name of my condition is not important to me because it doesn't change who I am or what my symptoms are at this time. I already know there is no treatment or cure. No way are we paying out of pocket for something like this. Besides, our kids already know the situation and what types of symptoms to look out for concerning themselves and grand kids.

I'm sorry, I can't remember the name of this blood test. I do know it is not usual or cheap.

As my title states about how I feel about this, "Oh Great! Here we go again.....!"

 

[Zaphoon]

Craig,

It makes me wonder just exactly "what" is suspect about your diagnosed...

 

[Craig Mattice]

My impression was strictly because we had not had the genetic marker test ever done. We looked into it three years ago but insurance wouldn't pay and neither would I. It seems to be the only "definitive" test for HSP.

I wonder if it's just more important for him as a neuro to know than I care to know?

 

[sral]

If he was suspecting you could have something else that would be more treatable then it would be worth investigating. It definitely wouldn't hurt to ask what he was looking into.

Good Luck

 

[olly]

hi craig

sorry you are having to go through all the diagnosed rubbish again.
there are about 30markers for hsp,but like pls it can be sporadic or mutant gene.
the test may or maynot show anything,if it does not that does not rule it out.
umn desease is a clinical diagnosed,no pathological test during life can give a definate diagnosed.
i had genetic testing and was clear(though when i asked they seemed a bit shadey,they can tell alot about future health concerns like cancer etc)

here is some info on hsp tests i dug up for you.
http://www.sp-foundation.org/hsp-heredity.htm
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=hsp

those with pls who have lower limb onset can be classed as hsp in the early years till further evidence shows upper body/bulbar involvement.
some neuro's may class those with lower body involvement as having pls,while i know some with upper/lower body plus bulbar classed (diagnosed)as hsp,but i would say they have pls.
every neuro has there own opinion on this.
all i can say is dont take what this neuro said to heart,its his opinion.
do what you feel is best for you and your family,as you said it may not make a difference.
did you have tests to rule other things out that may cause umn symptoms?
if so and theres no other explanation you can be diagnosed'ed on clinical symptoms alone.
is it just your legs involved or upper body?
if the test comes back clear you may have pls.

i hope you can get the answers you need.
we are always here to help and talk things through:razz:

 

[lovelily]

Hi Craig....Do what your heart tells you to do. You have been on the 'merry go round' for so long! If you want to get off, I won't blame you.