Jeff Maciejewski

[Guest guest]

Hi Everyone,

Well, we're back. I haven't posted in a while, as we dropped out of the

group in December. The last communication I sent you all was that we were

going down to Baylor Medical to see Dr. Jankovic for a confirmation of MSA.

I had heard some of the horror stories of Dr. J's " bedside manner " , and

they were pretty much true to form. We were there for about 3 hours. I

must say the workup and history was very thorough, though it was done by a

neuro intern. Dr. Jankovic only came in for the consultation, which lasted

about 30 minutes. He felt that Jeff did not have MSA, as he was not

exhibiting some of the " classic " symptoms, namely the OH and sexual

dysfunction. He diagnosed Jeff as having " paroxysmal dysautonomia " with

the possibility of MSA sometime down the road. He did confim neurological

dysfunction, as Jeff at that time was having intermitent problems with

balance, microwriting, urinary problems, mild sleep apnea/narcolepsy and

mild swallowing problems. Dr. J actually wasn't bad (personality wise),

just pretty matter of fact, and pretty sure it was not MSA.

Well, over the past three months, all of the " mild " symptoms Jeff had have

become severe, and on a few occasions, life threatening. His blood

pressure is all over the place. Lying down it's 130/90, sitting up it goes

to 110/80, standing up goes to 80/59 (just an example). He's passed out

half a dozen times now because he's stood up suddenly. He has TERRIBLE

sleep apnea, and it leaves him exhausted in the morning. He's almost

wrecked the car a few times on his way to work because he can't keep his

eyes open, and he gets extremely disoriented. His swallowing problems are

alarming. He almost NEVER can swallow liquids properly. The other day he

said that he went over an hour without being able to swallow. He finally

got somewhere and put something solid in his mouth to swallow. He had his

first MAJOR bowel impaction. That one almost put him in the hospital. He

has both urinary and sexual dysfunction. He has terrible swelling in the

hands and feet, and his joints hurt terribly. His speech is also slurred

and very hard to understand. Yesterday morning his speech was almost

incomprehensible, sounded like someone who's had a stroke. But after 30

minutes or so it cleared up a bit.

I feel so bad for him. He's 37 years old and he walks like an old man. He

feels totally demoralized, and we are both scared. Jeff feels as though

he's dying. Last Wednesday we went to our internist, who's been there

through all of this, and initially said he might have MSA. Jeff told him

how he felt, that he felt like he was dying, and for the first time the

doctor looked at both of us and said " Jeff, I believe you are dying also " .

We were to have a follow up appointment with Dr. Jankovic on April 19th.

But when our internist saw Jeff last week, he got on the phone and they

moved the appointment up to tomorrow. So, Jeff is on his way to Houston as

I write. I can't go because of the kids, so one of his best friends is

going down with him. I'm afraid for him to drive alone all that way (6

hours).

Please keep us in your prayers. And, though the circumstances are

terrible, I'm glad to be back with the group. I feel like we need this

support now more than ever. And I appreciate every one in the group who

contributes. Thanks again... M.