Mesenchymal Stem Cell Therapy - Mayo Clinic

[mbmurray]

Well I just got the word, I go for my screening visit week of Sept 9th. Only taking 25 participants, and with me living in VA, guess lucky I got this far.... First symptom coming up on 2 years, and diagnosis was in Jan so my timeframe is shrinking in terms of getting into trials...

I participated and completed the Cytokinetics tirasemtiv phase IIb trial in May and with me not taking Rilutek, this will probably be my last hurrah in terms of drug trials. This is only a phase I trial, so not sure what to expect. Hoping something positive comes out of this, I hate sitting around and going nothing to battle this (except taking supplements) and see myself getting weaker (arms especially)

 

[dbltree]

That's great MB...keep us posted!

 

[AfraidButNotAlone]

Good luck! God Bless!

 

[mbmurray]

I am here in Rochester, MN at the mayo clinc, today is first of 4 days of appts / testing to see if I qualify for the stem cell trial. Will let you know how it goes!

 

[AfraidButNotAlone]

GOOD LUCK!

I pray it goes well AND it works!

 

[ottawa girl]

You're a hero in my book! Thank you.

 

[vickim]

I have my fingers and toes crossed. Good luck and God bless.

 

[skipper66]

Good luck to you. We are all rooting for you!

 

[Txgirl]

Wishing you luck

 

[mbmurray]

Update:

-- Day one met with Neurologist associated with stem cell trial, had neuro exam and discussed symptoms, etc. He did some additional blood work not done during my initial diagnosis last year (copper, zinc, Ceruloplasmin Enz(S)), as well as ordered genetic test for Kennedy's disease. He did so because I had/have hormone and/or fertility issues growing up and to this day, which is a classic symptom of Kennedy's, but I do have UMN issues which is not normally associated with Kennedy's, so he wanted to rule it out just in case. Would be great if I did, test results not for another week or two.

-- Day two, had pulmonary tests, FVC was 98% woo hoo! Passed short term memory test (35/36), Had another EMG, no surprises, "showed a diffuse disorder of motor neurons or their axons", 99% I have ALS, blah, blah...

-- Day three, meet with neurologist again, bunch of paperwork, FRS, etc. Says I am in the trial. On slim chance kennedy disease test is positive, I wont be in trial...

-- Day four, biopsy to cut out adipose fat to culture/re-engineer stem cells. Come back in 2 months for injection

Thats the story! Mayo clinic is great, nice people.

 

[ottawa girl]

Did the biopsy hurt? 98% excellent!

I'm thrilled for you and admire what you're doing.

You got more guts than me.

 

[AfraidButNotAlone]

Sounds promising

Are they adult or fetal stem cells?

 

[mbmurray]

Update #2

Bummer #1 - Got the Kennedy disease genetics test results back - NEGATIVE. It was a shot in the dark, but was holding out hope

Bummer #2 - Today Dr in charge of trail called me up and said that 1 of the 6 participants that have already received the stem cell implant has exhibited strong adverse effects (don't know what it was). But, that they need to review and consult with FDA and that my schedule implant timeline for November is now postponed

@Afraid&Alone - This trial is using adult stem cells

 

[vickim]

I sorry. Don't give up hope.

 

[AfraidButNotAlone]

I'll keep praying