Gains from my transplant are slipping; begrudgingly weighing Plan F

[Trudy]

Slipping

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.

[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?

[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

[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!

[laacevedo625]

sct gains setbacks

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!

[mbeiermd@hotmail.com]

changing from outer to inner journey

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.

[Sparky10]

(((Dave)))

There, just wanted to feel that fighting spirit a bit closer.

[Irene]

Dave! Hope you feel better soon! (I know you will, too!)
(at the risk of sounding too mushy, I'll stop right there!)

[banshee]

Dave,
You're tough. Just keep swinging. We're all right there with you fighting. Better to have Plan F than Preparation H.

[EveD]

Dave, Hang in there and keep fighting. I have found your stories and suggestions comforting and appreciate all you do to help us cope with MS.

[teena marie]

Hugs to Laura. This must be pretty intense for you both.

Teena Marie

[determined]

Dear Dave,
I am saddened by your news but terribly encouraged by your attitude and fortitude. Your positive approach brings inspiration to all who follow your postings. You have touched so very many lives and we are all indebted to you for bringing this community together. Keep doing what you are doing and stay positive and strong. It has been said already but let us all know what we can do, even if it is to write some words of encouragement for you as you have written for all of us. Hang in there and keep on keeping on!

[LivWell]

It is sobering news to say the least, but one thing we all know is we are more, MUCH more than our MS.

I echo the sentiments above and reiterate the fact that you, we, are not alone.

MS-IS-BeatableSomeday - no question.

[kko]

Well, this news just sucks- You are one of the few inbox people I always click on to see what's up in ms-land. I was sitting in the drive thru line @ In-n-Out and read your news. We know you have MS, just as everyone 'knows' I have MS. And we all watched me go straight down the tubes w PMS until 5 months ago, when I diagnosed myself w B12 deficiency. Yup, no one else figured that one out. Currently curing my PMS one B12 shot at a time. Today I am a 9 (EDSS) and I will keep getting better. I was a perfect 10 for the last couple years, an active 10, though Pls be sure all the other usual suspects are ruled out, just as if you never had MS before. I know I'm beyond lucky to have something treatable; I expect the PMS will be more manageable in the future. Keep up the fight. Would send you a Double-Double if I could. Kris

[cgarri]

Dave, Plan E isn't through with you yet. Straight lines are nice, easy, predictable. But life is not made from straight lines. Variability, randomness, unpredictability, that's life.

Have you had an MRI showing active lesions? Well, then, you don't know MS is back. When healing from an injury, it's not unusual to tear loose scar tissue. Sometimes it's required. You and I have never had to heal a CNS injury. We don't know how it's supposed to go. And, that confounded aging process gets thrown in, too.

OK, so I'm biased. I want Plan E to work. I know you want it, too. I can only say one thing, stay active my friend.

Craig