Andrea Kaiser Shares Her PPMS Journey Through to Stem Cell Therapy in Exclusive Interview

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Andrea Kaiser's PPMS journey

Andrea Perry Kaiser is a woman on a mission. The Long Beach, New York, resident is soon to undergo hematopoietic stem cell transplantation (HSCT) for her multiple sclerosis (MS). Kaiser contacted Multiple Sclerosis News Today to chronicle her journey, both before and following the treatment.

She received a primary progressive multiple sclerosis (PPMS) diagnosis in 2010, at the age of 54, after almost two years of wondering what was going wrong with her body.

FullSizeRender (1)“When I was approaching the age of 50 in 2006,” she said, “I attributed anything funny to peri-menopause. I would fall for no reason, [have] heart palpitations, 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 [disk surgery]. Before jumping into surgery I wanted to explore further.”

She began moving toward an initial MS diagnosis when “a chiropractor told me that my gait was off. I went to a neurologist in 2009. After a slew of tests, I was told that I had MS. There is no definitive test for MS, it is more about ruling out other diseases. There were white lesions on my brain. My spinal fluid test was negative.”

Initial treatments, including steroid infusion, were not successful. Kaiser’s ability to walk and move continued to deteriorate, and beginning in 2010 she began “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, then I had to buy a tricycle due to balance issues.”

Her level of disability is now between 6 and 6.5 EDSS. EDSS, a measurement of multiple sclerosis disability, stands for Expanded Disability Status Scale and is  commonly used in MS clinical trials and for the clinical assessment. A score of 6–6.5 means that she requires walking aids in order to get around.

“I hope to stop the progression before I end up in a wheelchair. Any improvement in my current disability would be icing on the cake,” Kaiser said.

She will travel to Jerusalem, Israel, on March 16, and begin receiving treatment at Shaare Zedek Medical Center under the care of Dr. Jacob Rowe. Kaiser has spent years researching the procedure, she said, and belongs to several online groups that have provided her with a great deal of information. She also maintains her own blog, focusing on her planned treatment.

HSCT is a common treatment for bone marrow and blood cancers, and is sometimeFullSizeRender (2)s used to treat people with MS. The technique involves harvesting new, undeveloped blood or bone marrow (hematopoietic) cells, typically from the person affected with the disease (autologous). The goal is to remove faulty cells and replace them with new cells that will no longer cause demyelination, the principal cause of MS.

Kaiser warns that HSCT has only been effective when it includes an initial chemotherapy procedure to remove faulty cells before replacing them. “There was a ’60 [Minutes]’ segment on stem cell fraud by Morley Safer. This made me very nervous,” she said. “NO CHEMO, NO CURE.”

Although it is not currently possible to modify or halt PPMS, Kaiser does take medications for specific symptoms, including Ampyra, which helps her to walk, and Mirapex for restless leg syndrome. She recently stopped taking Tecfidera because she did not feel it was helping. Kaiser also takes supplements, including 5000 U vitamin D, B12, probiotics, COQ10, and D-mannose. Special diets and a naturopathic physician were not helpful for her, however, Kaiser does incorporate physical activity into her daily routine. This includes physical therapy, yoga, water class, Feldenkrais, and weight training.

Her highest hopes, though, are that stem-cell treatment will help arrest her disease and, possibly, restore some lost abilities.

“I have spoken to women in the U.S. who have undergone HSCT,” she said. “It is very encouraging. I correspond with people  from around the world who have had successful treatment. The goal is to stop the progression. If you regain any lost ability, that is icing on the cake. It does happen. 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, 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.”

Kaiser is skeptical of the reasons given by professionals in the United States for not allowing HSCT.  The procedure, she agreed, is “very extreme and serious.” But, she said, “MS is not a fatal disease, as cancer is, which is part of the reason doctors, in this lawsuit-happy country, won’t do it. It is not illegal, but it is not FDA approved. My attitude is: My body, my life, my choice.”

Multiple Sclerosis News Today will continue to follow Kaiser, and report on her experiences with HSCT and her progress.

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  1. Phil Longford says:

    Everyone with MS, of all types, PPMS, RR, SPMS, are keeping tabs on Stem Cell Treatment. When I was diagnosed, with PPMS, my wife asked my consultant, about stem cell treatment. He very sarcastically said “If you really want to believe everything you read in the papers!” He is a totally git. Hope is quite useful. I will try almost anything. Although happy (and very appreciative) to let others be the guinea-pigs first. Good luck.

  2. Ally grant says:

    I really wish that people would stop calling HSCT “stem cell treatment ! The stem cells are NOT the main part at all . I had HSCT in November last year and it has given me back my life. As far as the “No Chemo No Cure” mantra goes , I’d like to point out that for me personally I don’t believe that HSCT is a “cure” by any means , but it’s the best we have right now .. This is my story ..

  3. Mary Clark says:

    For those who are newly diagnosed or those who are not good candidates for HSCT, please keep an eye on the regenerative Tisch stem cell trials, in New York City, which look hopeful. Wheelchair Kamakazee’s web site explains the difference between the HSCT procedure (chemotherapy and possible remission) and the Tisch procedure (temporary re-myelination or semi-permanent repair of damaged tissue in the central nervous system) very well. Best of luck Andrea! HSCT may be the standard of care in the US for certain MS patients within the next few years. it sounds as if you can’t wait for the US to catch up with Israel. I hope you will have family support with you.

  4. Brooke says:

    It’s not only a lawsuit-happy country…. MS drugs aren’t cheap. If you cure it, what happens to the lost revenue for these poor drug companies? I’m 31 years old, diagnosed with MS last April and sitting somewhere within PPMS/SPMS. I’d really like to walk down the aisle in May… unpredictability of the disease means zero confidence. I’m hoping to get into one of the stem cell procedure trials running here in Canada.

    • Googs Dowling says:

      Wish you good luck. Yes the drug companies would lose out big time if a lot of diseases were halted or cured. Keep positive. ?

    • Hoss says:

      Hi Brooke,

      So sorry to hear that. I was wondering if you had any lesion in your MRI when you were diagnosed. How long did it take to be diagnosed from the first symptoms.


  5. Barbara Mayes says:

    I wish you the best on this journey please keep me informed on your progression i have ppms am very interested in what me or my Dr can use to help me I’m 59 years old was diagonsed when I was 45 have been having terrible problems with this ms please keep me informed thanks

  6. Geoff Flynn says:

    Hi Brooke, they are doing it in Ottawa. Dr Freedman and Dr Atkins do I think around 15 patients a year. However if you’re ppms they won’t touch you. I was told it doesn’t work for ppms. They’re also doing it in Calgary but when I applied they told me they’d only done about 3 patients in 2 years. I apparently wasn’t bad enough and they said maybe when you get worse. Unfortunately you are on your own, in my experience neurologists and the MS clinic are no help. I had it done in Israel last October. I’d say it works just fine for ppms.

    Best of luck to you Andrea.




  8. Inge Freeth says:

    Dear Andrea, I’ like to follow your Journey,Have a save one !I am strolling arround the net looking for people who done or doing this treatment.I am diagnosed since 2012 RRMS/PPMS well they don’t really know, Its MS for sure , and i have to live with that.Still hoping that i will Know that their will be a cure for us.Good luck , greetings Inge.

    • Shasha says:

      Celiac may hurt the brain/body and make the immune system not work right. Celiac people may get many infections Herpes 4 Mono/Epstein Barr or Lyme or other. Infections may turn off the immune system and do damage. Celiac caused my MS due to making low oxygen in my brain and 30 years later I got Lyme which is hard to go away when a person is Celiac. LDN may help 99% of MS people…helps Celiac/Lyme/MS and much more. LDN is $1 a day. I also need supplements/detoxing/bioidentical hormones/low stress since my adrenals are now burned out. Gluten may hurt the gut lining so less nutrients absorb..then cells are not made right to work right to burn oxygen. Gluten may hurt the thyroid and other glands. Gluten may hurt the stomach lining so less intrinsic factor/HCl and enyzmes are working. I needed to detox heavy metals/Chemicals by Far Infrared Sauna. EDTA/DMPS IV chelations which unclog my blood vessel/lower inflammation/swelling and remove heavy metals. Exercise makes more neurons and mitochondria. Sunlight helps the immune system work right. Good water/organic/friendship/love/pets/God help me. Now GMO food/roundup may hurt people. I can’t eat heated oils/corn/gluten/bad fats/any food with a label. Popcorn hurt my left leg so I could hardly walk. Frozen peas also hurt that leg. I am ok if I don’t cheat and stay on my strict diet…can dance etc. I eat Asian/Celiac diet with LDN to help block hidden gluten. To me all MS people can heal. MSG/chemicals may hurt people. Each person needs to figure out what food helps/hurts them and avoid chemicals/mold/infections of bacteria etc. Vaccines may hurt and not help. Pure real food and water/exercise/sunlight…basics of health are needed. Many MS people are not getting thyroid medicine due to low TSH, but they still need it…free T4 and free T3 are not ok without thyroid medicine. Thyroid medicine helps mitochondria burn oxygen. Alternative doctors may help rebuild the brain/body, detox people, offer Vit C IV’s and glutathione which help fight infections and much more. They may give the right kind of thyroid help and get people off drugs that hurt. They offer LDN. Best wishes.

  9. Shasha says:

    I need no gluten/dairy/soy/sugar/GMO…vitamins/good oils/minerals/proboitic/LDN..detoxing for my MS. Alternative doctors EDTA/DMPS IV chelations and Vit B12 methylcobalamin shot etc…all awesome help for me. MS people can heal.

  10. jerry lux says:

    hi andrea, i also have ms since 2001. i fit your exact profile and hopes and expectations for the treatment. i have also researched and other stem cell treatment types and locations in russia,panama,mexico, they chase you when you apply ?accepted. very scary. i am 58, male, and now using a cane. i have the means to have the treatment

    would you do it again ?

      • Shasha says:

        LDN helps block hidden gluten which may hurt MS people. Trying to eat gluten free may also help since it is a low dose. LDN is low dose Naltrexone which Alternative doctors give mostly compared to other doctors since it is cheap…$1 a day or less. LDN is like a miracle to help my MS. It is taken at night..3mg to 4.5mg and drink lots of water. I take it in the day since it gives me too much energy at night. It works best at night. It comes from a compounding pharmacy. Ask a compounding pharmacy who gives LDN to people.

        See my other comments. Best wishes.

  11. Steve Rasch says:

    I have had MS since 2012 and was correctly diagnosed in 2013. My first treatment was Tecfidera, and due to steady deterioration in my ability to walk, my doctor switched me to Tysabri last year – still no halting of the disease. I am now off everything, waiting for Ocrelizumab to become available. My doctor originally diagnosed me with RRMS, but now is calling it Primary Progressive. I am a soon to be 65 year old male. I am very interested in the results of your treatment. Please keep me informed

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