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  • thebrandes

    I have applied for the procedure with Dr. Burt, but was turned down because there was no change in my MRI from 2012 - 2013.  The problem is that I am getting worse with mobility.  I have MS since 1995 and Rheumitoid arthritis and Hansen's Disease.  I have a three year old who I have to be here for and I feel like I'm just being tossed to the side.  I have requested "off trial" info for treatment but have gotten nowhere.  With little ones I don't want to leave the country.  

    QUESTIONS:  When will this procedure be available for those who may not qualify for trials but are still in dire need of the treatment as dmd's have not worked and I continue to have to have steriod infusions when I have flare ups for the MS.  As of now I am using a wheelchair most of the time, can not drive at all because the Rebif I was on caused seizures that won't go away even after stopping the drug and going on Techfidera, I am homebound and my cognitive abilities are failing.   Is it just too late for me?

  • leslrae

    I was diagnosed with MS in January of 2013. After failing Copaxone, rebif and steroid infusions I decided to look up other options. I progressed very quickly and was in a wheelchair more than I was out of it. I had horrible cramps in my legs. I had no function in my hands and I was so tired getting up to go to the bathroom was a challenge. I ran across a blog online about Dr. Burt and decided what did I have to lose.

    I met Dr. Burt in October of 2014. It was at that initial meeting I was told I did not have MS but actually had Devics Disease. Devics or (NMO) is a sister diesease of MS and has many of the same characteristics. Dr. Burt informed me I was not a candidate for the study but he would do all he could to help.

    In January 2014 I got a  call from Dr. Burts office. I was a candidate for HSCT stem cell transplant. I started my pre-testing in February and Had my official transplant April 7th of this year. My improvement just 4 short months later is nothing short of a miracle.

    Before transplant I was in a wheelchair, had no bowel or bladder function, lost use of my hands and partial eyesight in my left eye. I was on 12 medications including Baclofen -160mg Lyrica-150mg and ultram-500mg

    Today I can walk, my memory is back, I have full function in my hands I take 3 pills a day to keep my immune system healthy and I am enjoying life. It is like I was never sick. At 28 years old and a mom of a 4 year old I was ready to be sent to a nursing home. Today I am in school and working part time. I chase my 4 year old like any other mommy and I am so blessed and very grateful to HSCT for healing me.

    Dr. Burt and his team were amazing. This isnt a small commitment. They check on you they worry about you. You are not just another number to them. You are a person and you are treated more like a family member. I saw Dr. Burt everyday of my transplant. I hear from his office once or twice a week and I can call their personal cell phone numbers anytime. The nurses at Northwestern were on top of their game and I was looked after every minute. 

    The sooner you become proactive and look at all your options the better. I was met with opposition from family, from my neuro, and friends but I knew I wasn't really living life and I would have done anything to feel one day of normalcy. Now I have my whole life ahead of me. Its not to late to take that first step! 

    Check out my website www.wearorangeforleslee.com to see how I fundraised and to see my blog through caringbridge. It goes a little more in to detail about my journey! 

  • Michellew58

    the brandies keep the faith.  

  • dottiev
    I'm so happy to see this finally being discussed on this forum. I had HSCT (Hematopoietic Stem Cell Transplant) 11 months ago in Moscow, Russia. I didn't qualify for Dr. Burt's at Northwestern because I have PPMS, but Dr. Fedorenko does the same procedure in Moscow, and has for almost 10 years. I was the 10th International patient treated, and now they are booked into 2017. The thing that people must know is that "stem cell therapy clinics" do not offer HSCT. HSCT is the only scientifically proven treatment to stop the progression of MS, the "stem cell therapy clinics" just want your money. You may have a temporary improvement of symptoms, but it's just that, temporary. HSCT uses high doses of chemo to reboot the immune system, then your own stem cells are re-introduced to help recover from the chemo. It's saved my life.
  • ahmad1211

    I think anyone who newly diagnosed with MS should IMMEDIATELY treated with HSCT (ASAP), If it not works then he or she could try another medicine

  • meekocat

    I have RRMS and I too have been turned down by Dr. Burt in Chicago.  No lesion activity even though my disability is progressing.  I've only been on Copaxone, will not try another DMD because I don't think it will work.  What difference does it make if I have no more relapses but my disabilities continue to worsen!

    We need to have this available NOW and for everyone.  Russia and Italy have both proven that HSCT WORKS for PPMS and SPMS.  I fear I am getting close to SPMS.  I have insurance that will cover this in full, which it won't do if I leave the country.  Russia now has a 3 year waiting list.  My current physical condition started last year after a fall down the stairs.  I was diagnosed with MS in January,

  • danjonana
    Hi im a mexican patient diagnosed with ms, im interested in knowing where stem cells for this research are coming from, ive heard they take this cells out of your own theeth, is this true or false?
  • kludwig
    danjonana wrote: Hi im a mexican patient diagnosed with ms, im interested in knowing where stem cells for this research are coming from, ive heard they take this cells out of your own theeth, is this true or false?


    Dr. Burt uses autologous stem cells for his treatment. That means he uses your own stem cells. These stem cells are normally found in your bone marrow. Patients are given a drug called Nuepogen which causes the stem cells to migrate into the blood stream. A centrifuge is then used to harvest the stem cells from your blood stream and they are frozen until needed after the chemo.
  • kludwig
    danjonana wrote: Hi im a mexican patient diagnosed with ms, im interested in knowing where stem cells for this research are coming from, ive heard they take this cells out of your own theeth, is this true or false?


    Dr. Burt uses autologous stem cells for his treatment. That means he uses your own stem cells. These stem cells are normally found in your bone marrow. Patients are given a drug called Nuepogen which causes the stem cells to migrate into the blood stream. A centrifuge is then used to harvest the stem cells from your blood stream and they are frozen until needed after the chemo.
  • magikmarc

    danjonana wrote: Hi im a mexican patient diagnosed with ms, im interested in knowing where stem cells for this research are coming from, ive heard they take this cells out of your own theeth, is this true or false?

    They do not take the cells our of your teeth. This is FALSE!
    They give you medication to make the stem cells come out of your bone marrow and into your blood, then they filter your blood and collect the stem cells from that.

    Whoever told you that they get them from your teeth doesn't know what they are talking about

  • polishmoo

    Typical trials focus on those recently diagnosed with MS and with relatively low EDS scores. I have SPMS and am quite advanced with disabilities. The stem cell work sounds quite promising, but, again, the focus seems to be on the less advanced cases. However, for those like me, though a treatment may not bring a "miraculous recovery" so that I could walk again, a recovery which would restore me to where I was just 5 years ago would be HUGE! Has anybody considered and is open to treatment with this in mind?

  • MSMel
    I'm also SPMS and would love to try this! Is the clinical trial a cost $$??
  • llv12194913

    I am also advanced with my ms and would like to know what can be done for a person with SP ms.Curious if you learned anything new for your situation. 

  • jaber
    I hope drug manufacturer do not make obstacle in FDA approval process! I believe chemo and stem is the only way to stop MS. Let's all of us push FDA, senate or any other responsible party to make this treatment available to all MS patients.
  • jaber

    This type of treatment should be available to all newly diagnosed with MS to prevent further damage to brain! Why we have to wait until patient go through all those modifying drugs and when it doesn't work and brain got damage and patient lost functions, then think about how to give those functions back to patient!!

    I am 35 years old and I've been diagnosed more than10 years ago and am still active in life but have more than 100 plaques and 4 black holes on my brain, though diseas has already damaged my baron a lot, but even if I can stop the disease at this step, will be the best thing can happen in my life.

     

    i am really willing to go through this trial but I am concern if they turn me down since I have no disability yet except fatigue and some minor problem in my right foot!!

  • refusetoquit

    Jaber, you probably have a good chance at that trial,...........it's PPMS as I have that may not..........you sound like a good candidate.

  • jaber

    Interesting story about multiple sclerosis HSCT: http://youtu.be/SRtgFdKmfdo

  • izzie

    how can i find more information about stem cells?

     

  • donnakaufmann

    I have had MS for 30 years. They say I have plateaued. The disability I have is old injury when my MS was active in my 20 and 30's. What I need now is repair. Would you know of any clinical trials that maybe I would qualify for? I feel so close but yet so far in having my life back .

    Thank you!

    Donna

     

     

  • soshime

    I went to Chicago last fall to eet with Dr. BUrt. He and his partner were amazing to meet with. I was not able to do an MRI with contrast at the time because my kidney function was terrible, so that was a problem. I have been dx'ed with RRMS for 13 years now. I was declined treatment for Dr. Burt's stem cell procedure at the time because my MRIs were not "bad enough", even though my symptoms continue to worsen. I have tried every DMT out there - and every one has failed me, or I have used it to its limit (Tysabri). Aubagio nearly sent me into kidney failure after 10 months of usage - a freaky rare side effect. Gilenya did nothing for me. I was on Copaxone at the very begninning for 4-5 years with a combo of CellCept becaue Copaxone alone was not strong enough to manage my MS. TEcfidera was my last option.

    I am going to my neuro in 5 days to re-challenge Tecfidera for the 3rd time. I was on it for 6 months -thinking I was doing fine-  then I developed a rash which turned out to be Vasculitis. Then I immediately had a bout with ischemic colonitis - which I believe was the vasculitis acting on my colon & lower intestines. It was painful and dangerous. At what point is stem cell an option, if you've failed everything else available? And how to approach Dr. Burt with a case like this? I've been off my MS meds for over a month now - i'm just waiting for that attack to come. My MS is very active when not under control.