Re: Athena report

[Guest guest]

Barbara,

9 pages of a report on a DNA test for CMT? This really blows my mind!

Seems absurd to me. How the he** many words does it take to

say " negative " or " positive " or " unclear " , etc. from a DNA test?

First thing Tuesday morning, GO to the doc's office and don't leave

until you have a Full Report (however short or long it is) AND another

appointment scheduled very soon. You have a right to copies of all

tests that doctor's do, so exercise this right.

Secondly, if this doc is so hard to reach and you can't get another

appointment SOON then he/she doesn't seem to 'care' enough, you might

want to find another doc, and transfer all your files/records.

If this had happened to me, I would not put up with such BS.

~ Gretchen

[Guest guest]

Gretchen,

I agree with you that it stinks.

Really, I am looking to find someone who can look at my son and give us some

more guidance.. and the doc who did the Athena test was not " personable " ...

(that is the nicest way I can put it). Basically said, " you know that you have

CMT right? " And told us to come back in a year... didn't even hand us the

brochure about CMT that he had. We had already determined that he is not the

doctor for my son.

However, about getting the complete record, I think we will try to send a

release form directly to Athena. The docs office is a ways from where I live,

and public school is starting, my grad school is starting and my practicum is

starting all at the same time. Plus, I already dealt with trying to get info

from them before we went to Mayo.

However, I am trying to find a doctor to see my son since the Mayo Clinic looked

into his CMT, and said that they can not find another reason for his peripheral

neuropathy but they don't think that the CMT is the cause of all his symptoms...

which include GI, vision, cognitive issues, and sleep issues.

And really, the " official " information about CMT is just the pits. Never

mentioning pain, for example. I wish we could find a way to get the public

information brought more up to date. Fro my son, his friends look up CMT on the

Internet and decide that it is really no big deal and wonder why he is not

willing to do more things with them... (Like paint ball... which is way beyond

his current functioning). Even grandparents don't get it, thanks to the

" official " information.

Barbara

[Guest guest]

My report from Athena is 9 pages as well- I think that is standard.

The first page is a summary of findings- positive/negative/unclear,

etc. The rest is detailed explanations of the findings that don't

reveal very much in the way of information. Kind of their process,

their limitations of liability, etc. I didn't find too much in the

way of new information on the other pages.

It took awhile to get the entire report from my doctor as well- going

to the office and waiting is a good way to get the copy. That's how I finally

got my entire report.

I found the most useful information on the first page.

Good luck! Lenka

[Guest guest]

Hello Barbara,

All I ever got was a copy of a letter to my neurologist that said the

results were " consistent " with HNPP. The other pages may have been

those letter charts that result from the analyse of the gene structure.

EdM from NH

[Guest guest]

Barbara,

I am looking at my Athena report. There are more than 9 pages in my report. My

report consists of two pages pertaining to the Sulfatide Autoantibody test and

there are 6 pages pertaining to the complete CMT evaluation. However, in both

reports only the first page show the actual resusts, interpretations and any

comments. The rest of the pages describes the methods of testing and references

to CMT such as reports and articles written on genes and CMT. I would think that

you have the page of the report you need.

You are entitled to the full report, however, and will obtain one by writing a

short letter to the doctors office asking for a copy. You could write the same

short note to Athena and may get a copy quicker.

Good luck and God bless.

Elaina/NY