RE: My Appointment At Stanford

December 28, 2001

Otherwise known as a holding pattern, eh, Bill??

Still find that " burnt out " myopathy intriquing!

Sounds like he has quite a grasp on the situation.

So do you feel like it's a positive step for you??

Lynn

--- dad4dogs33 wrote:

> Hi everyone,

>

> On the recommendation of Dr. I got into

> see Dr. Katz at

> the Stanford Neuromuscular Clinic on December 26th.

>

> I drove up north with Dennis and we're both very

> impressed with Dr.

> Katz and his knowledge of my situation. He spent a

> nice amount of

> time discussing my treatment course and life

> experience.

>

> Dr. Katz does not feel that I truly have

> Polymyositis. He's not sure,

> but he will be suggesting some additional testing to

> Dr.

> on my UCLA muscle tissue for types of Muscular

> Dystrophy. He's not

> sure that anything will be found but it's worth the

> effort. My

> history and pattern of weakness does not fit into

> his perception of

> Polymyositis.

>

> After some discussion we have decided that

> additional treatment risks

> far outweigh any treatment benefit at this point as

> the muscle biopsy

> report shows severe myopathic changes approaching

> end stage muscle

> and that the immunohistochemistry supports the

> diagnosis of a " burnt

> out " inflammatory myopathy. We have decided that

> until we have more

> information I will not begin therapy with Enbrel and

> would like to

> begin a slow taper off Prednisone with hopes that my

> own system will

> eventually produce cortisol.

>

> I'm sure Dr. Katz will be in contact with Dr.

> after the

> holidays and a report is forthcoming.

>

> Regards,

> BillG

> Camarillo, CA

> PM or ??

>

December 28, 2001

Bill.. I, too, wondered if you consider this a positive thing? I think I

would. Annette

Re: My Appointment At Stanford