Navigating Roadblocks with SPMS
I saw my neurologist earlier this week. After my work-up, we sat and discussed how well I manage my multiple sclerosis. How well? No comment. Suffice it to say this disease is a worthy adversary.
I have been feeling a little funky since that appointment. I have been looking to hematopoietic stem cell transplantation (HSCT) therapies here and abroad, and I am not a candidate. HSCT is carried out to reboot the immune system. The two main types of HSCT therapies are autologous and allogeneic. Autologous uses the patient’s stem cells, whereas allogeneic uses the stem cells of a donor whose human leukocyte antigens match the recipient’s.
Using my cells defeats the purpose, as my cells are mutated. A bone marrow transplant poses too high a risk of acquiring an everyday infection that could prove life-threatening. Additionally, studies of the treatments have shown more promise with relapsing-remitting MS, as opposed to the secondary progressive MS (SPMS) that I have.
Hence, a roadblock.
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I had my hopes set on HCST. Although it is not a current reality, who knows what the future holds? Disease-modifying therapies continue to funnel through the pipeline, so I will always have hope. That said, I will release my grasp on this particular plan. Sometimes we hold so tightly to one idea that we are closed to others. I am guilty of this and need to coach myself through the process.
Living with SPMS is a lesson in navigating roadblocks. There are usually alternative, albeit undesired, routes. Do not let the undesirability stop you. Much like the B side of a 45 record (I am definitely dating myself), there is much to be gained by giving it a chance. I’ve discovered some of my favorite songs by changing things up. Had I never deviated from my original plan, I would have missed out on many things that I now love.
So much of life with MS is impromptu. I have had to relinquish the emotional tie-in with any particular plan as things can, and do, change. It is important to be as malleable as possible because the alternative will bring immeasurable frustration. And to what avail?
We all bang our heads against the wall in vain attempts to change our circumstance. We know how well that works. This energy is a precious commodity. Stay cognizant and challenge yourself by redirecting it elsewhere.
As I said, I have been a bit blue since my appointment. It is OK and even healthy to experience the funkiness. Allow yourself time to metabolize the sadness, then set goals to help you move forward. I wrote down five things I can do today to help my body. It was helpful to have action steps, however small, and I felt better as a result.
I know there are amazing multiple sclerosis treatments on the horizon. I also know I must do what I can right now, both emotionally and physically, to help my own experience. In turn, I hope to illuminate the B side and help others find the beauty in the process.
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Comments
Sandra
I smoke and have tried to stop several times. But I live in a stressful environment at home. In other words I am in my early 60's. Have 2 sons that moved back home. 1 is not too bad but my youngest is out of hand his father and I do not get along. Everytime I try to stop stuff starts over again. And I can't afford to leave as I have no income and no place to go. I have PPMS. AND YES I STRESS ALOT. I CANT TAKE HALF THE MEDS BECAUSE OF BEING ALLERIC TO THEM. OR HE WONT PAY FOR THEM. LIVE IN A LIFE I AM.YES I KNOW MY SMOKING IS BAD FOR ME. But when the 2 are not home I can cut back to 1/4 pack. Then they are home there goes the whole pack . My oldest son is the only one who helps me as I can barely get around now. As he told me I had not gave up on him when he was in drugs and alcohol. He has been clean over a year and can't find a job because of his past. No one will give him a second chance. But he said he would help me all he can .So yes quit smoking if you can I have tried it all. Surprised cancer has not showed up yet.And yes I get checked every year for cancer.
Kathleen
Jennifer once again you help us who read your words. When I saw ms news today pop up on my tablet... I was in a funky mood too... terrible pain today... a new issue with my shoulder that is excruciating. .. but I digress!
Your comment "and need to coach myself through the process" is what I have been unconsciously doing these days and coaching myself sounds right! Yes, feeling the yuk and then thinking next steps and small obtainable goals that comfort and bring a little more sunshine. I also felt the "how are you managing your ms? heaviness... not a simple answer... how long have we got to answer that one? :))
I am sending you a warm wish for a shorter funk than a longer one. Don't you too wish we had magic wands to make it all better for everyone? I do. You help that happen with your words and your faith even in a funk! :)) Kathleen
Jess
Hi Please check out the Mexico clinic.. they will accept you. So many people have gone there gotten accepted and had major improvements. And yes they had SPMS. Majority of them. Please just check it out. Good luck ?āŗļø
L
So sorry to hear. What DMT are you currently using? I also have SPMS and the same quandary. Letās hope the pipeline moves quickly.
Lmh
So sorry to hear. What DMT are you currently using? I also have SPMS and the same quandary. Letās hope the pipeline moves quickly.
Joan Quilter
When you get toward the end stage of SPMS, neurologists are useless. Save your time and money.
Glenda Hendry
Excellent article. Can you share your five steps? I know for me, one of the biggest steps is asking for/accepting help when needed. That's been difficult, but I don't get myself in as many precarious situations when I do it.
Suzanne Sparks
Hello, Jennifer,
I had an autologous stem cell infusion taken from liposuction of my abdomen in 2014. For the first few weeks I felt energized. But my symptoms slowly returned to my pre-infusion abilities. I. Was advised I should return for a 2nd infusion 6 months after the first one. Since I didnāt have any lasting improvement, I chose not to. Itās expensive & I just didnāt think it was the answer. Thanks for addressing HCST. Suzanne
Jana Morgan
Your article was the best thing I have read in a long time and was exactly where I am at the moment. Thank you so much to be a shinning star for me and I am sure for others with this worthy adversary! The word worthy has a ???????
Robert Welsh
Drugs are not the first or only option. We know where that is going anyway, disability and dementia.
I've been thinking insulin resistance is at least half of MS. Learning how to be disabled certainly doesn't help any. It makes a way deeper hole to get of.
I've added fasting onto AU Prof George Jelinek OMS Prpgram.
Watch the videos, cost $0.00 Eating better but less often?
Getting a little sun exposure might be a challenge there.
(NZ) Dr. Caryn Zinn - '...On Fat and Fasting'
https://www.youtube.com/watch?v=8BYvHgs-oww&t=6s&list=PL1WuUQY-BO43niopf6apQ7l3aNR8Kqazy&index=14
George Jelinek On The OMS Recovery Program
https://www.youtube.com/watch?v=Y1gH0pBmOEc&t=0s&list=PL1WuUQY-BO43niopf6apQ7l3aNR8Kqazy&index=5
Dr. Jason Fung - 'A New Paradigm of Insulin Resistance'
https://www.youtube.com/watch?v=eUiSCEBGxXk&index=13&t=0s&list=PL1WuUQY-BO43niopf6apQ7l3aNR8Kqazy
OMS Website
https://overcomingms.org/about-oms/about-prof-jelinek/
Cynthia Clayton
Where is the clinical trials being held for Secondary Progressive multiple sclerosis & how can I get In on the Trails for this type?
What Medications/Treatments New & Old are out there now How do I Sigh Up?
Kevin Keplinger
I'm sorry to say Jennifer that you seem to know very little, if anything about HSCT & like most people that write articles on HSCT just continue to spread misinformation!! HSCT is the most effective treatment there is for all forms of MS. Yes, you can have HSCT for SPMS & also PPMS. HSCT should have been approved as a front line treatment for MS a long time ago & the fact that it is still not approved is outrageous!!
Jennifer (Jenn) Powell
Hi Kevin,
I appreciate your input. Much like any treatment it truly depends on the recipientās ability to accept it. I trust my team of neurologists and appreciate your feedback.
Have a happy day!
Jenn