Still working on ALS Clinic

[djbailey]

MUSC is certified by MDA. We have attended a couple very good clinics that were certified by both MDA & ALSA. I am sure that there are good clinics out there that are not certified by anyone. I will say that MUSC is working to improve there clinic, just not sure they are there yet.

 

[karla r]

MUSC and Duke in Charlotte are the 2 places I have the referrals to.

 

[karla r]

Well, my doc has new staff. They are supposed to send the referrals. I also got an order for a modified barium swallow test. And finally one doc saw the fingers cramp then twitching. She said it was fasculations. So, we will see what happens this coming week as far as the referrals. She also gave me copies, and said if they don't get them again, to send them myself to be sure they did get sent.

 

[karla r]

Oh, I did get a better muscle relaxer that seems to be helping more. Zanaflex. It's working a good bit better than the old one.

 

[Ells]

Hi Karla,

Be careful with taking a lot of caffeine alongside Tizanidine/Zanaflex. It increases the uptake of the drug and can cause Low BP.

Ells.

 

[ShiftKicker]

Ells, that is a REALLY good reminder. It can be dangerous if you're not expecting that.

Karla- glad you got something to help with spasticity. I found Zanaflex (Tizanidine) to be super helpful and way better than Baclofen. Best wishes with your new referrals. I hope you get the best care possible.

Fiona

 

[KimT]

Praying for you dear Karla.

 

[karla r]

Thank you! I will be careful about the caffeine!

 

[Colawoman]

Karla, my husband Thomas (PALS) and I went to both MUSC & the VA in Charleston, both were less than we were used to at USF in Tampa. Now we are going to Dr. Brooks with Carolinas Healthcare in Charlotte. Thomas is very pleased with the care, information and staff members there. I'm so sorry this disease is so seemingly put on the bottom of the list.

 

[karla r]

Doc office called. They sent stuff to the wrong ALS clinic (VA instead of regular one) so now they want me to gather all the stuff, and send it myself.