Adlai2Dec 25, 2022
Cat on a Table with a Cup and Overly Distraught People 1/2
- charcoal sketch
Trying again to get back into the swing of things after a protracted relapse of sorts. Truth be told it wasn’t a relapse per se. My MS doc has informed me that I have been promoted to Secondary Progressive. The symptoms can at times be quite debilitating now there doesn’t need to be a relapse to bring them on; everything just kind of smolders there …
#carchoalsketch #ata188 #spms #ppms #cats #adlaiburman #MSChat
Adlai2Dec 23, 2022
➿
#carchoalsketch #igartists #multiplesclerosisresearch #ata188 #spms #ppms #msartist #multiplesclerosisart #cats #adlaiburman #adlaiburmanimages
Silver GorillaNov 30, 2022

Oct 31 2022 article on ECTRIMS’ poster on #ATA188 and #MultipleSclerosis

“ECTRIMS2022 – ATA188 Still Easing Disability in Progressive MS Patients
Up to 4 years of EMBOLD trial findings also show potential for remyelination”

(I missed this write up previously).

This is the trial I am in. They are expanding recruitment to RRMS soon.

I’m happy to answer any questions about my experience. — I am still “blinded” in the trial.

https://multiplesclerosisnewstoday.com/news-posts/2022/10/31/ectrims2022-ata188-still-easing-disability-progressive-ms/

#ECTRIMS2022 – ATA188 Still Easing Disability of Progressive MS |...

Data on SPMS and PPMS patients given ATA188 for up to four years in EMBOLD trial show continued gains in disability scores, MRI findings.

Multiple Sclerosis News Today
Show threadSilver GorillaNov 21, 2022

@morekindness

6 months since 1st transfusion.

At my visit 11/18 the EDSS rater said I was much improved from last rating.

I’ve noticed less fatigue, less spasticity, walking distance and pace better // from 1/4 mile to 1 mile. Average total of 2 miles per day.

Cognitively sharper. Reading graduate level monographs and reteaching myself Latin (I took 3 years in high school).

For me it’s a win. But I am blinded to whether I have active drug.

#ATA188 #MultipleSclerosis. #MSChat

mellow kismetNov 21, 2022
@SilverGorilla2 Hey, thanks for the follow. I've been following the #ATA188 news. How long have you been on it? You could DM me if you prefer.
Silver GorillaNov 19, 2022

#MultipleSclerosis #MSChat

#ATA188 trial update

👉🏼Update after EDSS exam.

EDSS examiner thought my exam looked much better than last time he saw me; but no specific details.

Day 185 since 1st transfusion. Feel great - except when I don’t. Typical #MS sx triggers - virus fatigue travel cold temp etc.

Show threadSilver GorillaNov 19, 2022

@LomelindiMS

The study
is to find the first ever medication for nonactive Ptogressive MS.

The drug trial Is by Atara Biotherapeutics anti EBV T cell transfusions. #ATA188

They are starting a trial for relapsing #MS. See. Link. https://multiplesclerosisnewstoday.com/ata188/

#MultipleSclerosis #MSChat

Silver GorillaNov 18, 2022

@StephZihms

I’m glad to see you in our MS community. Expand the reach of your post by using #MultipleSclerosis or #MSChat.

I had my first MS relapse in 1984 while in army ROTC camp. Left the army as JAG Officer in 1997 due to MS fatigue and relapses that went undiagnosed til 2016.

Retrained as a counseling psych but left for good in 2016 after bad relapse.

Now inactive SPMS and in the #ATA188 EBV T cell transfusion trial.

Silver GorillaNov 18, 2022

#MultipleSclerosis #MSChat #ATA188 trial update.

Day 185 since 1st transfusion. Feel great - except when I don’t. Typical #MS sx triggers - virus fatigue travel cold temp etc.

I traveled to Denver (13 F; -10 C) while I’m fighting a virus (not Covid). Bad sleep.

The sidewalks are covered with 3” snow and there’s a severe weather alert!

Both my Neuro + Study Manager took off early for T-day.

I need to find out if the substitutes + MRI tech will make it in for EDSS.

AAGH! Bit of a whinge.

Show threadSilver GorillaNov 17, 2022

@Adlai

No worries.

You can always use #MSChat plus more specialized hashtags so folks can find your post in the larger #MSCommunity and in the subtopic group that interests you.

I’ve had #MS since 1984 and am just recently getting into creating #MSArt.

The picture is a card I made for my #Neuro for “target practice” on where the LP goes. 🤣

I’ve had 3 LPs this year as part of the #ATA188 trial for nonactive #SPMS.

Thank you for your insight!

#MultipleSclerosis

❤️Anne