Hi, I’m Andrea.

I am flying to Israel in two weeks to get HSCT (Hematopioetic stem cell transplant), which includes intensive chemo therapy, to halt the progression of my multiple sclerosis. I  will be there for 6 weeks.

I was officially diagnosed in 2010 with PPMS, after two full years of tests.

Back when I was approaching 50 in 2006, I attributed anything strange with my health to peri menopause. I would fall for no reason, I had heart palpitations, and I had extreme sensitivity to heat.

I had bladder issues. I was told that I had a fallen pelvic floor, rectocele, cystocele. I had reconstructive surgery in 2008.

I had lower back pain and was told I needed fusion L5S1. Before jumping into another surgery, though, I wanted to explore further.

A chiropractor told me that my gait was off.

I went to a neurologist in 2009. There were white lesions on my brain. After a slew of tests I was told that I had MS. There is no definitive test for for MS, it is more about ruling out other diseases.

The first course of action was intense steroid infusion. No help.

Then, from 2010 to present I had a slow but steady descent. I went from no outward signs to needing canes, a rolling walker and a wheelchair depending on the distance.

I mark my descent by the years. One summer I could still ride my bicycle and the next I had to buy a tricycle due to balance issues.

Balance is one of my biggest issues. Some days the seas are choppy some days they are choppier.

It’s not actually possible to determine whether I have PPMS or SPMS. There is no specific test. I never had a “dramatic” episode where I had to be hospitalized. I can recall some minor incidents as early as 1983, which may or may not be attributed to MS, but again — it’s impossible to prove.

There aren’t any DMD (diease modifying drugs) for PPMS. Only ten percent of the MS population have primary progressive and all of the trials currently being done in the US are for Relapsing Remitting.I take Ampyra (the walking drug) and it really helps; I know if I miss a dose. I take Mirapex for Restless Leg Syndrome. I was taking Tecfideria, even though it is for RRMS. I stopped taking it recently because I don’t think it did anything for me, and I want to wash it out before HSCT. I also take 5000mg of Vitamin D, B12, probiotics, COQ10, and D-manose.

I have tried the Wahls Diet. You can Google her. She claims to have cured her MS through diet; it didn’t help me.

I have been to a functional doctor and a natural path doctor. No help.

I do physical therapy, yoga, water class, Feldenkrais, weight training — anything to stay fluid and mobile.

I discovered HSCT on the web, and it’s taken me a year to research and vet this procedure.

There are several closed Facebook groups I belong to: Hematopioetic Stem Cell Transplant, HSCT Israel, HSCT Russia, HSCT Mexico, and PPMS HSCT. I have learned so much from the file sections.

YouTube has many videos of people who have sucessfully halted the progression of their MS with HSCT.

A 60-minute segment by Morley Safer in 2012 on stem cell fraud at a Panama clinic made me very nervous. Stem cell treatment without chemo doesn’t work. I am still being contacted by the Stem Cell Institute; they are a fraud.

The treatment I am having is called BEAM and HSCT. BEAM is a myeloablative chemotherapy regimen that effectively wipes out the bone marrow and the immune system.

My expectations are as follows:

I hope to stop the progression of my MS. I hope to regain lost ability. I want to take long walks, I want to dance, I hope to walk my children down the aisle when they marry, and I want to help take care of any grandchildren I might have.

I do not want to spend my life in a wheelchair. I don’t want to lose my independence.

In the meantime, I’ve gotten a head start on short hair so it won’t be such a shock when  I lose it due to the chemo…

***DISCLAIMER – Some parts of this blog are written by my family.***

52 thoughts on “Hi, I’m Andrea.

        1. Hi Andrea, thank you so much for getting back to me. I am unsure of my EDSS score however I’m probably between a four and a six. I can still walk with terrible balance so I need to hold onto someone to be able to walk. However after about 30 minutes 45 minutes at the Max I can no longer stand up anymore I get very weak. Yes I am going on February 14 to have treatment with Dr. Rowe.

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  1. you go girl! It’s the best thing you can do for yourself! I’m CIDP (cousin to MS)
    I had my HSCT in April 2012. Best decision! God bless you, I’ll be watching you!

    Liked by 1 person

  2. Andrea, you are in my thoughts and prayers as you undertake this change. I know it must have been a difficult decision but there are so many of us who care about you and are wishing you the best. Be well!!!
    Donna

    Liked by 1 person

  3. Andrea, so glad we got a chance to visit with you yesterday. We wish you 100% success and look forward to receiving your blogs. We will stay in contact via e-mail. I hope to dance with you soon. Love you, Meg

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  4. I am excited for you! If you don’t mind answering, how are you going to cover the costs of this? They must be huge: travel to Israel, your stay there, and then – the procedures themselves. I had Novantrone years ago and it made a huge change for me (and I didn’t even max out on the dosage), so the chemo part + stem cells makes a lot about sense to me. You must be very busy but if you have the chance, please document not only the procedure, but also the financial part of your journey. Thanks!

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    1. It is $120,000 plus air and apartment . You are in the hospital about three weeks. I am traveling with my husband and daughter. Mexico and Russia are about 50,000. People fund raise, there is a lot of information in the file section of each group. I am using an inheritance to fund my procedure.

      Liked by 1 person

      1. Oh my gosh that’s much more than I expected! I’m not sure how much I expected it to be, but now that you’ve revealed that number, I guess I thought maybe in the $50-75K range (plus travel and board). Wow. I have seen on some FB posts that some people have managed to get their insurance to cover the procedure, but I doubt it. If so, lots of people would be going for it! Thanks for the information. I wish you all the very best; I know that a lot of people are rooting for you! 😀

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  5. You are a total inspiration! Sending you love, healing thoughts and prayers! Dance party on the beach next year!
    PS: you look beautiful with short hair!
    ❤️ Estelle & Steve

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  6. Good luck Andrea. My name is Lee. I also suffer with PPMS and had HSCT in Israel in 2011. In 2012 after disease started progressing again, had allogenic HSCT. I did the non myeloblative chemo but if there is anything I can help you with let me know.

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  7. Glad to hear you’re going for it. I had HSCT done in Florence in 2014 by Dr. Saccardi and it halted the progression of my MS. I encourage all who have the right MS profile to find a way to get it done. BTW it seemed I had just transitioned into SPMS from RRMS and Dr. Saccardi thought it wasn’t too late to try HSCT. He was right! The treatment isn’t fun, but nothing compared to the prospect of worsening MS. It was easier than I thought it would be. Good luck!!

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  8. Andrea,

    I am very hopeful this treatment will stop your MS progression. You are very brave. My MS course has been very similar to yours. Like you, I want to be able to continue walking even though it is very difficult at this point. Please keep us posted.

    How were you able to arrange for this treatment? It is something I would be willing to try.

    Tara, how were you able to arrange for your treatment?

    Thanks,

    Sharon

    Liked by 1 person

    1. Honestly, my husband learned all about it on HSCT FaceBook pages. I can’t speak to specifics. After researching several options, we decided on Dr. Saccardi in Florence, Italy. I contacted him via email and began the application process. He needed all my medical records, MRI discs, etc. We had a Skype conversation as well before he accepted me for treatment. But first, have you tried to get into Dr. Burt’s clinical trial of HSCT at Northwestern in Chicago? He rejected me, I am too disabled for his study. But perhaps you aren’t. Definitely try him first!

      Liked by 1 person

      1. I too didn’t fit the criteria for the study at Northwestern because I had Novantrone in the past. Probably would have rejected me anyway because I haven’t had a true relapse in some time. It is very frustrating.

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  9. I am with you, I was diagnosed when I was going on 50 and I now have secondary progressive ms. I am 62. I pray you will have a good outcome and things will go safely and well for you. I know how trying these treatments get, you get so psyched and then the result can let you down. I pray you will have none of that. I have only heard good things about stem cell. Please keep us posted, we will be waiting to hear about your journey.

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  10. Andi—Great job on the blog, I will be checking in often to follow your progress. You have a great attitude—keep it up!!! And you are beautiful…long hair, short hair, or no hair. Hugs to you!

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  11. thinking of you every day. Came across an article and spoke to an extremely knowledgeable woman at the vitamin shoppe. The proper way to take turmeric is by making a paste with black pepper and coconut oil and or a mixture of extra virgin olive oil. I;ll let you know the proper way to make it when you start the recovery. Very strong anti-inflammatory. Sending you love every day. always looking for ways to rebuild the myelin sheaths. I believe. love you – Lori

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    1. Hi Lori,

      I am from india and also suffering from MS for last 16 years. I am on wheel chaiir and can’t walk. I in very bad position.Can you guide how much quantity should be taken of all items you mention for making paste please contact at my mail
      stickergallery@hotmail.com

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  12. Dear Andie,
    You are an inspiration for anyone fighting the progression of ms. As you know I was diagnosed with RRMS in 1997.
    I am currently on a therapy produced in Israel from Teva Neurosciences called Copaxone.
    You are getting the best care for this in Israel.
    I will follow your blog as you begin this brave healing journey. You look beautiful. Our prayers are with you Om Shanti shanti shanti.

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  13. Paula I hope all went well.. I’m planning on going to Israel as well. If you have a moment can you call me to chat a little please.

    Jason 480-686-5276

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