Re: [BULK] questions about PFT, plus rant

[Guest guest]

Steve

I can almost garentee that the SSDI doc will not know about mito, nor care.

He/she is paid by the SS department. I have no personal experience with this

as I haven't started that process. My son, however, did have to do this.

I would hunt for some info saying that breathing problems are the result of

exercise intolerance and take it to the PFT tech. He/she might ask to have

it done before and after exercise or at least do it after. You could also

walk your heart out before going for the appointment and hope you don't have

to wait too long. When I had my pulmonary function tests a couple of days

ago, everyone who had to do the walk, was asked to come in a wheelchair so

as to be rested.

I certainly know how frustrating this process is as I have helped parents of

my student go through it. They think that if they make us jump through

enough hoops, that we will shut up and go away. Hang in there.

laurie

>

> Reply-To:

> Date: Thu, 10 Feb 2005 02:44:27 -0500

> To: >

> Subject: [bULK] questions about PFT, plus rant

>

>

> Laurie et al

>

> In the latest segment of my unbelievably drawn-out attempt to get SSDI (I'll

> spare everyone the entire saga) I called my Medical Disability Determination

> office. I asked why I hadn't heard from them in over two months AFTER I had

> sent the latest of many documents and forms they requested. They said that

> they needed more info in order to determine my status and therefore that I

> had a 2/18/05 appt. with a certain doctor of their choosing, to get a

> particular test that they said I needed. They said they had mailed me a

> letter but I never saw it. Then later today (Feb. 9) I got that letter,

> dated Jan. 11 but postmarked Jan 28.

>

> The test is a PFT which I think is a Pulmonary Function Test (a measure of

> breathing ability according to the lady at the determination office). I

> tried to explain that I get out of breath only after exercise, and that it's

> just one of many neurological symptoms, but she said " I don't care about

> that " . She went down the list of my symtpoms that she had in front of her,

> misinterpreting each. For example, where it says I have extreme difficulty

> sleeping due to peripheral neuropathy (feet pains), she wanted to know if I

> had seen a psychiatrist for this. When she came to headaches, on the list,

> she asked whether I had seen a doctor for this. I tried to be patient, and

> explained that yes I had seen quite a few. Then she noticed that, yes, I

> had. She saw on the list that I reported vision problems, and of course

> asked if I had seen a doctor for this. Yes I had, I explained, in fact a

> doctor had replaced one of my corneas. Oh yes, I see that, she said. And so

> on, down the list. When I told her that yes I had seen a doctor for each of

> these, she then noticed that yes I had stated the same, on the records she

> had. But she obviously didn't really care, or something. It was a really

> strange conversation. I'm hoping that someone who knows something about

> medicine will actually finalize the medical determination. But she called

> herself (in the letter) " the examiner " , so who knows? She also asked me if I

> had HER phone number, and I said yes that's how I had been able to call.

> Then she said that she was " just making sure " . Twice she told me not to be

> late to the appt. All of this in a really considerable Southern accent, and

> she kept on calling me " honey " . :-)

>

> I'm concerned that I won't have any " breathing ability " problem the way they

> are going to measure it. Truth is, the rapid panicky breathing (with profuse

> sweating and faintness) that I used to get has been rather less these days,

> which seems to be related to a CoQ10 regimen. I assume they are looking for

> emphysema. It's like they are focused on this because it's the only thing

> they've ever heard of, that could cause my problems, and they won't even

> take the trouble to read about what I actually have. I have to humor them,

> but I feel trapped by an incompetent system.

>

> The doctor I've been sent to is IMHO very unlikely to know or even care much

> about the complicated details of mito. Aside from the obvious, which is that

> I'd better finally get some kind of advocate, does anyone have any concrete

> ideas for dealing with these half-wits? Shall I try to fake serious

> breathing impairment (which I don't really have, unless you're counting what

> happens to me when I've finally collapsed into near-coma, which I am NOT

> going to go anywhere near, on purpose, for anybody except MAYBE a cardio doc

> with whom I've previously discussed mito)? Shall I try to explain mito to

> this PFT doc? Do you think he is going to measure lactic acid?

>

> Steve D.

>

>> Date: Tue, 08 Feb 2005 15:05:05 -0500

>>

>> Subject: pulmo update

>>

>> Hi

>>

>> I'm having problems with my ISP - they put a new fire wall up. I hope I

> have

>> solved some of the problems.

>>

>> I just got back from my pulmonology appointment. I do not have scarring in

>> my lungs.

>>

>> I had to do a 6 min. hall walk - I did it, but wonder how. My O2 stayed

>> above 95. I had problems with the breathing tests as they were after walk.

>> The doc said that I was not dealing with any lung problems, but over-all

>> muscle weakness. He said that pushing my body causes lactic acid and that

> it

>> drives increased respiration. So, it is back to a once a year CT scan and

>> just dealing with the air hunger.

>>

>>

>> laurie

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>