Australian 60 minutes - MS and stem cell treatment

[supermum_ms]

Okay, to be honest i'm feeling a little weepy, ahhh happy go lucky me who can laugh and find the good in everything, has come a bit unglued, boy was this program confronting for me.......Here was a beautiful articulate women in the prime of her life, and what she feared most was living mine!

Young women dx with MS at 35, lovely professional couple with 2 little kids. She was a nurse, and she made the hard decision to travel to Russia to under go Stem Cell treatment, because it was not available to her in Australia. Why it wasn't available is because in Australia, Stem Cell has been classed as experimental and a last resort. MSers must first have tried all other available treatments and they must of all failed to slow down or halt disease, and before they get classified as being too disabled for further treatment ie permanently in a wheelchair.

She was more afraid of the potential of cognitive decline, than she was of anything else and having little children made it that more important for her and her family to do it now, before she was permanently disabled. The program didn't go into DMD's and I did get the impression she hadn't been on any. If she had, it wasn't mentioned at all, she'd only been dx for a couple of years, so if she had been on DMD(s) there wouldn't of been a lot of time given to them working or failing. It came across to me as being a proactive decision, based on the unknown of MS and the researched potential of Stem Cell treatment.  

Good or bad, this program showed a desperate young women, shaving her hair off before the chemo took it, she needed to use a walker or wheelchair most of the time prior to the Stem Cell treatment. 6 months after treatment, she's jogging along the river and at the gym doing a workout with a personal trainer. Follow up MRI showing lesions no longer there and other lesions smaller, than they were before she had the Stem Cell treatment. The program was talking about her making this decision to 'save her life' because MS can kill you (aggghhhhh), her recovery being confronting to the Australian medical position on Stem Cell treatment for MS BUT 6 months to me wouldn't really be outside the norm for recovery/remittance in RRMS and neither would her MRI results in early MS..........what am i missing here?

Though i understand the fear of loosing your cognitive skills, I personally can no longer compared it with not being able to communicate with those around you......enough said cause it's a really hard one for me. Honestly though, if you have never experienced a particular MS sx, is it what you don't experience what concerns you most OR do you have concerns about your worst today sx, declining even further? I'm the later and just wondered how you think...

Unfortunately the transcript and video wont be available for a couple of days but when it does I'll definitely put it up to get your feed back.

Cheers............JJ

          

[petemarsden]

Ive had MS or 15 years ( relapsing remitting) and for 15 years was quite dismissive of the illness. I had to be careful not to undermine the potential for this disease to affect others. As a disability support worker, I have seen the very worst of MS at the same time personally experiencing the very best. Recently, I have been diagnosed with Secondary Progressive MS and am now quite disabled. The story on sixty minutes was misleading and built for the drama of television. During the fifteen years I had relapsing remitting MS, i regularly ran  20km at 5 min/km pace. My magical cure was a positive mental attitude. Now, MS  has gotten   a litle  more  serious
but my attitude hasnt changed.  MS is so variable in its presentation and affects us who suffer from it so  differently.  For me personally, I found the sixty minutes program offensive

[disillusioned2014]

here is the link to the USA tedtalk about the stem cells being used in studies for MS..! Pray that they start to use it here. I personally think that this is a key to if not a cute, to at least helping the progression to Slow or stop! disillusioned2014

http://new.ted.com/talks/siddharthan_chandran_can_the_damaged_brain_repair_itself?

[Lulu54]

Stem cells are being investigated and studied - here in the US and elsewhere .  like JJ, I think they are going to be a huge plus for us in the MS battle.  I haven't watched this program yet, but am full of questions about this sequence.

Like the rest of you, I wish her well and hope she is MS free, but find the timeline and preemptive strike oddly out of sorts with what I know.  

[karryon55]

Wow that is odd JJ. So she had the treatment in Sept 13 & this is her at just 6 months now. It looked like she has been doing pretty well for a quite a while from the way I perceived it. If she has RRMS as well the there is every possibility that some improvements could have occurred anyway.

The Russian doc said it would take about 6 months to see any change as far as I can remember. He also said they have had zero deaths/complications from this treatment, at their hospital anyway, but hey if I walked in the door I would put an end to that with my crazy Neutropenia lol.

I seriously think that this treatment should be at least under trials here in Oz. The thing is with these programs.....you can guarantee they will sensationalise everything because they want to get the ratings regardless of the consequences of their actions. So adding the statements of dying & cure is definitely going to get you watching their show.

The consequences for us all now will be our friends, work mates etc all saying to us "hey why don't you go get that stem cell treatment. It will cure your MS you know" lol.

Take care,
Karry.

[supermum_ms]

Hey Karry,

Did you by any chance noticed the short time line?

She was dx with RRMS in early 2013 and had the stem cell treatment by September 2013 and its only been 6 months since the treatment and her story just aired. Wouldn't that seem an incredibly short time frame, for the stem cell replacement to work and repair sufficiently to account for the level of recovery she's saying it did?

Oddly, i actually do think harvesting your own stem cells could be the smoking gun for MS, and i hope in time and further research, it does actually pan out......still drives me nutts when programs state MS is slowly killing an MSer and then start throwing around 'cure' way too early to be using the c word :D

Cheers.........JJ      

[karryon55]

Lol the DMD's are poisonous but the chemotherapy before the stem cell transplant isn't huh.

I am very happy this has worked out for her though. I watched the program on TV last night when it aired & I found some of the statements inaccurate or misleading. It was really nice to see her improve so much after the treatment though.

The advertisements the week before the show aired (which I really didn't listen to properly) did not make me think this woman had MS as they kept saying she could possibly die. It wasn't until the night before I saw a bit more of the ad for the show where I heard she had MS & then my ears pricked up.

It presented to me a young woman who was very scared of what "might" happen when we all know it may never happen. I guess this had nothing to do with the treatment rather how she was perceiving the journey of her MS in the future. I think many of us have been down that road at some stage. ;-)

I have to admit I also had a little sniffle mainly because of the subject matter being so close to home but also that we are not that far apart in age. It's also sad to hear that many of her fears are my reality at the moment.

I wish her the very best & hope that she continues to either improve or at be stable. I also really hope that this treatment option is made more readily available to Australians living with MS. I think that people should always be allowed to choose their treatment options if they are available to them.

I would love to know how she is in a year, 5 years & 10 years to see the effectiveness of the treatment.

Karry.

[supermum_ms]

I checked out her movingmountains2013 .com website and she makes quite a few controversial statements, very over the top thinking and from my perspective, I am not impressed with a lot of what's she's said!

Her intro information says...
"I had hot flashes between my shoulder blades, as well as intermittent dizziness, fatigue and concentration issues. During 2012 I suffered with these symptoms for many months before consulting my doctor for an MRI. At the time of diagnosis, I had an EDSS score of 1.0.............Since my diagnosis, my health declined seriously. I had to leave my job as an E.D nurse. My EDSS rose to 3.5,"

I gather she never did try any DMD's by this.....

"I have sought second opinions from neurologists, demanded advanced investigations such as lumbar punctures, and emailed or phoned MS specialists from around the world. All concluding with one very controversial but not rare opinion: the medications offered to me to manage my MS, despite costing over $30,000 a year and being the very best available, are not safe or effective in the long term. They are poisons that I will be administering in order to slow, but not halt, my MS. Oh, and they come with side effects and risks that would only be acceptable to a desperate person."

In some respects i wish her well, though i'm cringing........

Cheers........JJ

[supermum_ms]

I'm still feeling a little raw, though it's probably the heat, and over doing it from a couple of days ago, it's just thrown me off my game. I'm not really getting anything back solid enough, from the time I get up and it's not taking much usage before I'm just back to my worst lol i'm over it already!

http://sixtyminutes.ninemsn.com.au/8810871/Russian-Roulette-medical-treatment    

Laura - It didn't give those specific details, but all week the program clip ad voice over, was saying she was slowly dying from MS, though during the program it was more that MS 'can cause' breathing issues etc and kill you, not that she was in that situation. I got the impression it was pre-emptive, i can only recall her specifically talking about the issues of having tingling and numbness in one leg.

Definitely having problems with fatigue and it sounded/looked like lassitude type fatigue to me, you only saw a noticeable tremor when she was at the airport and she was understandably very emotional. I actually wondered if the stress was making her seem worse, there was a lot of tears through out the clip and i really did think there was a lot of fear of the unknown aspects of MS, helping to push the decision along.

yousyous8 - I'm pretty fortunate to be both a realist and die hard optimist, i've always been grounded and able to alive in the here and now :D my future will be bright regardless.......  Not being able to get a sentence out of my mouth, is the thing I find more difficult to work with, its my Achilles heel.

Doublevision1 - Thanks for looking into finding a link, it wasn't up yet when i started writing my post but it's on the 60 minutes website today. lol The program was in my opinion sensationalism, over stating how available stem cell treatment was compare to Australia, too short on facts for my taste and i'd hate reading more 'cure' stories but i will give that site a look see out of curiosity.

Alex - My thoughts exactly, though i do know what its like when the fatigue is bad and cognitively your functioning with a swiss cheese brain, definitely not fun but i know worse.

Thanks for your imput, its always appreciated!  

Cheers.........JJ  

[HVAC]

My MS Neurologist giving a talk said MS cognitive decline is seldom like Dementia.I have only met one woman since I was diagnosed who truly could not remember who you were. She would call me and say "now who are you? "Mostly it is trouble finding words or following directions. I have had bad cognitive issues from MS since 1960's. I have learned to cope with them. I graduated with honor from college and I had trouble reading with double vision. I still have issues but I cope with them.

Of course just because we have MS does not mean we can't get Alztheimers as well. My Neurologist said in his experience it is rare.

Alex

[doublevision1]

Or just google the 60 Minutes Australia site. including the name Kristy Cruise in your search will help you to find the clip more quickly..

[doublevision1]

Medhelp deleted a link I posted to a FB group called "Hematopioetic Stem Cell Transplant - MS & Autoimmune Diseases." It's a private group. You can find it by searching its name, then submit a request to join the group. On its Wall, there are links to video clips of the 60 Minutes episode that JJ mentioned, posted by the woman who is the subject of the interview.

[yousyous8]

Hello JJ,

I'm so so sorry for your concerns. I hope the future will be brighter and your worries will be just that.. worries.

I didn't know about the "ultimate" treatment. I have no clue if it's really effective.

As for your questions about my concerns. I did have a meltdown after we found out about my sister (as you all probably remember...) and I think that was because I had taken life for granted. I always thought little health problems were related to vitamin deficiency or even cardiac problems, but never to some major problem. What worries me is that my sister won't be able to live the life she wanted, to become the professor or the mother she wants to be. I'm afraid she'll be permanently disabled with major cognitive problems. And this makes me sad. Also, my sister is only 26, I'm scared that in a few years, the condition will progress before she has time to fully live.
Also, people tend to be mean sometimes. 2 days ago someone told her OMG MS is THE worst disease on this planet. How can someone, well educated, say such a thing to a sick person even if it were true.
You all here made me comprehend the impact of the DMD and how they can help. I also think that a good life style improves the feeling of well being, even if it has no impact on the progression.

I'm sorry my post isn't much of an input. I'm sure someone here will have something better to say. Don't give up on hope :)

Best wishes.

[Lulu54]

That is one giant step to take - you don't say at what point in disability was she before the stem cell therapy? was she able to run before she went to Russia and she wanted to maintain her current condition?

It reads like maybe she was acting in advance of any problems and I would hope people would not do something so radical 'just in case' something might happen.  I hope that makes sense.

Stem cell therapy is still under investigation in most of the world for use in MS but can be bought as a medical tourist, if you have enough money.

I would love to see the entire report once it gets posted.