Gains from my transplant are slipping; begrudgingly weighing Plan F

[mbeiermd@hotmail.com]

Dave - my heart and hug are with you in this new challenge. MS and life are so unpredictable. I just had the worst relapse in over 10 years spending 2 weeks on the couch, struggling to walk; the symptom boxes all checked - yes. The time became an amazing opportunity for an inner journey as the outer journey was not possible. I found quiet, empty, still places in my mind, emotion and body that brought their own healing, gratification and wisdom. I know that I am a more compassionate, present person with my family and the world after my quiet time meditating and valuing the inner journey. My symptoms are better so that I'm sitting outside with my husband but the walking part ain't so good yet. May we find the balance between advocacy, seeking all the medical treatment that can help and using our current reality to find all that life has to teach us.

[laacevedo625]

Dave,

Check out the Wahls Protocol and Auroracollelo.com.

Best Wishes! You're the best! We all look up to you so much and get so much e.joyment of learning from ActiveMSers! Keep up the great work!

[ActiveMSers]

Thanks everyone for all the very nice posts. I took the weekend off to play with Laura for our anniversary. I feel very fortunate to have such good (virtual) friends. Keep on keeping on!

[cl3me]

Fiddlesticks. I think we were all collectively holding our breath, holding out hope that this would be THE answer.....good to hear that you are still framing the experience as a success as it did grant a reprieve, and it has furthered us along the research road. Thanks for having the courage to be a guinea pig for the rest of us MSers and sharing the journey with us.

Karen

[Guitar_grrrl]

Well, shit! I'm sorry things are going the way they are, but you've got the "living well" thing dialed in. Hang in there, my friend.

So, what is plan F?

[Trudy]

Dave,

I am saddened to hear that MS has started to creep back into your life, yet so thrilled that you plan on fighting the good fight. I will add you to my prayers tonight.

I too am hoping to receive the HSCT treatment and have just started gathering my eggs into a basket. I live in Ontario Canada and am hoping to go to Ottawa which is only a few hours away from me. I am very lucky in that in our country the HSCT will be covered and my costs will be considerably less. If I cant get it done in Canada I will look elsewhere.

I have been on Avonex, Betaseron, Tysabri (PML positive) Tecfidera. I am not going down without a good fight!

I thank you for sharing your story with us all, you have no idea how much it has helped me.

[Cvfactor]

Dave,

I just heard your having problems in that your HSCT failed to halt your disease. I hope you find relief with another therapy.

Take Care

[ActiveMSers]

Hey CV, it halted my MS like a champ... for four years. Thanks for the note. You too, Karen, Trudy and GG. Plan F is still waiting on insurance hurdles, but it will likely be Lemtrada or Rituxan.

-D

[IndirectHeat]

Recent MS diagnosis here (and full-time drug-discovery biologist). Given the mechanism of how people think that HSCT would work, why not have another HSCT? May just be that we need a hard reset button every few years... If the immune system contains a small number of cells that are attacking the myelin, it may be they just need to be flushed out of the system.

[ActiveMSers]

Another transplant is always a possibility, IH. But there are a few major hurdles. It's pricey ($200K), risky (1-2% odds of death), and time consuming (relocation to transplant center for 2 months). That's a lot to consider if it lasts less than five years.

I'm not cratering like I was before, so I don't feel as much urgency as in the Fall of 2009, when if I didn't get it done I was likely going to be in a nursing home or six feet under. But I won't lie and say that the thought never crossed my mind to have another reset....