Today's the day

[Suzannah]

Hi all,

Well, after my long three month wait, today's finally the first day of my evaluation appointment in Houston. I made it to Houston safely and will be heading to the hospital in not very many hours. My mother came with me, and we had some fun goofing around in the hotel room tonight. It was a nice diversion. I'm sooo nervous. I've never been quite this scared before. But I guess it will be good to hopefully get some answers.

It's not quite clear what I might be diagnosed with ... I seem to have mystery disorder with upper motor neuron symptoms but with slight findings off muscle myopathy on EMG. (Official comment from my emg-expert Neuro: "that doesnt even make any sense") So who knows.

But here we go ....

Suzannah

 

[MaxEidswick]

>But here we go ....


morning, Suzannah -- are you going to Houston Methodist?

Best wishes for the testing!

Max

 

[Suzannah]

Yep, Houston Methodist. Headed there shortly for 7am registration time after a rousing 2 hours of sleep last night. Saw your reply at 4 am when I got tired of pretending to sleep

 

[Nikki J]

Best of luck!

 

[Mike in Maine]

Wishing you the best

Mike

 

[wendya432]

Good luck!

 

[monster]

Thinking of you, good luck.

 

[MaxEidswick]

Good luck! Say hi to Karen, Joan, & Co. -- great folks. Are you there for the 3-day diag.?

 

[Suzannah]

Thanks, all. Things are going well. So far today I have done blood work, a long clinical exam with a resident and a young med student, an emg by a grumpy doctor and rounds with Dr. Appel and his students. Clinical exam was still highly abnormal for upper motor neuron indicators, but emg was clear!

He said absolutely no to ALS and that he feels this is most likely HSP and not PLS. That was the answer I was "hoping" for, if such a thing can be said. I still have a spinal tap and lung function test to do, but I think I may not have to stay the full three days. Have to meet with the physical therapist, too.

Thanks again for the support!
Suzannah

 

[billbell52]

My wife worked as a nurse for Methodist Hospital in Houston (Neurology) and took care of Dr Appel's patients. It is one of the best in MND. I considered going there since Dallas is not far away but decided the MDA/ALS Clinic at UT Southwestern was very good and a lot closer.

 

[Nikki J]

That is great news ( as much as it could be). Good luck with the rest of your tests. Remember drink lots of fluids especially caffeine for spinal tap and when they tell you to curl up and contract your abs do it as hard as you can!

 

[MaxEidswick]

>Remember drink lots of fluids especially caffeine for spinal tap

took 'em three tries for for my spinal tap -- one blood draw took 9 tries!

 

[JimInVA]

Suzannah,

Thinking of you and sending monster good thoughts your way, today...

Jim

 

[Suzannah]

Well, that spinal tap experience was les than pleasant ... At 130, the resident tried to talk me into letting him do it in my room, but I wanted to hold out for the radiology dept doing it under the fluoroscope thing. But he talked me into it, but he stuck me twice and couldn't get it. It was quite painful and I was shaking hard. He stopped and I waited 3 more hours to go down to radiology.

Radiology guy was better but struck a nerve which zapped me down my leg. Ouch. I was crying by the end, but mainly because I had been poked and prodded for 12 hours and was just ... done. Now back at the hotel laying flat till tomorrow, round two.

Thanks again for the encouragement today.

 

[Santa joe]

Thinking of you! Hugs and love.

Debbie