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Going to Panama OCT 2013

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    Going to Panama OCT 2013

    Hello Everyone,

    I have rrms and I am doing ok but I have been have on and off issues with my legs and I know my lesions are in bad spots. I have tried all the meds out there and I have had negative results or side effects. My last hope was tysabri but I tested jc + so after tons of research and refferals we decided that Panama was a great idea. I know there are mixed reviews out there and I know people are unsure if its worth the money but I need to be proactive, so please follow me through this journey and I promise to always be honest with my feelings and results.


    Just a little background- I have had rrms for 7 years dx in 2006
    I am 32, married and have a 2 year old
    I have over 17 lesions in my brain and two in my spine. The ones in my spine are the worst and causing me the most issues.
    I am currently doing solu Medrol infusions to help with some issues but not much is helping.

    My current symptoms are leg and back pain. I occasionally feel like I am walking on golf balls. I also get fatigued and feel drained. I sometimes feel that have weight hanging from my knees and at times feel a slight stiffness in my legs. Also, at times I feel like a short walk was a ten mile hike based on how my legs, ankles and feet feel.

    I will post on here with updates but you can also check out my fundraising page or email me.

    I know there are some negative ideas and feeling about stem cell therapy and I am not interested in bringing in negative views or feelings into and there is no need to post mean or bad things.

    DX in 2006
    SAHM and wife
    Waiting for the cure already!

    #2
    Here is my fundraiser letter I am putting out and it might also give you some insight on my issues....

    Hello Everyone,
    My name is Johanna Smith, and I have Multiple Sclerosis. I was diagnosed in December of 2006, just a few weeks after receiving my Bachelor’s degree from UNLV. It started with cold sensations and numbness in my feet. It then began to travel up my legs before finally stretching to my mid stomach. In the blink of an eye, I had gone from feeling on top of the world, to having no feeling from my belly button to my toes. Scared, confused and unable to walk, I found myself hospitalized and in the care of an apathetic neurologist whose bedside manner left much to be desired. He informed me that my current condition was the product of Multiple Sclerosis, a disease that I had little to no knowledge of at the time. In his opinion, I needed to prepare myself for a life in a wheel chair, for I would more than likely never regain my ability to walk. This was devastating news that left me feeling as cold and numb as the disease itself. I eventually regained the feeling in my lower extremities as well as my ability walk, but the rollercoaster ride that is Multiple Sclerosis is a constant reminder of how quickly that can change.
    Multiple Sclerosis has been labeled the “invisible disease”. This is due in large part to non-visible symptoms that many of those afflicted with this terrible disease must deal with on a daily basis. Although a person with MS may look relatively healthy to the casual observer, the disease may have taken its toll behind the scenes. It may not be until a person is amidst a “flare up” that the symptoms become more evident. This is true in my case as well. While my body may look fine outwardly, the constant MRI’s that I must endure tell a different story internally. Unfortunately the “flare ups” have become stronger and more frequent, and as a result I have been experiencing issues with balance and severe pain in my legs.
    Attempts to slow down the progression of the disease through proven medications like Avonex, as well as newer ones such as Tecfedera have been futile, as they have not reacted well with me. In fact, the side effects have at times been as bad or worse than the MS itself. After exhausting all avenues with respect to standard medications, we are forced to look elsewhere for solutions. Through extensive research, and with the backing of my current neurologist, we have decided that stem cell therapy is and has been my best chance at fighting the MS and possibly repairing some of the damage. Regrettably, the stem cell therapy is not available United States outside a few limited studies that are being done. Out of the places that are available, we feel most comfortable with the facilities and the treatment that is currently provided in Panama. (http://www.cellmedicine.com/)
    I completed the required application process and have been approved to undergo therapy in Panama. This procedure is not covered by insurance and therefore the cost will be 100% out-of-pocket. The cost to have this procedure done is $21,200.00 US dollars. We will also have to pay for our travel and 2 1/2 weeks stay. So from the bottom of my heart, I am asking for your help, donations, and support to get stem cell therapy in Panama. Please pass this on and spread the word. We can use all the help!
    Hugs and Love,
    Johanna Smith
    - See more details, updates, and be able to donate at:




    **Moderator's Note - Per MSWorld Guideline #7. SELLING ITEMS AND SOLICITING MEMBERS: Offering items for sale, trade, or free are not allowed. Monetary donation solicitations of members by way of e-mail, message board posts or in Chat are also not allowed.**
    DX in 2006
    SAHM and wife
    Waiting for the cure already!

    Comment


      #3
      jojo80,
      I hope you get the relief you are looking for in Panama at the Stem Cell Institute. It is a 'pain' that you can't post your info for donations on this site. Maybe you need to post your email address in another place. I truly hope that you have success with this treatment. I have been watching this develop for 5 or more years, but this stem cell stuff has been 'crawling' along ,here, in the US. Good luck Please keep us informed

      Comment


        #4
        thank you. I appreciate the support!
        DX in 2006
        SAHM and wife
        Waiting for the cure already!

        Comment


          #5
          If anyone has any doubts that the Stem Cell Institute in Panama is helping MS patients get well, look up Michael Phelon's story in an issue of Forbes magazine. It seems that he was treated in Panama in early 2012 and has seen very much improvement in his health.
          So much improvement that he is considering returning to Panama for a shot at further improvement. I don't really know or understand what purpose further treatments serve. I am simply passing on information. Good luck

          Comment


            #6
            thank you Jerry. I did read that article and I am glad you brought it up. I am unsure of what it means to have future treatments and it does worry me because it so expensive. My hope is that by treating now if I need future treatment that it will then be available in the US. We have to be proactive.

            xoxo

            Johanna
            DX in 2006
            SAHM and wife
            Waiting for the cure already!

            Comment


              #7
              jojo80,
              Do you know if the clinic in Panama treats PPMS patients? I contacted Dr. Burt's clinic at Northwestern and I was told that his treatments have not had success with PPMS cases. That is why the clinical trials rules always 'exclude' PPMS.
              It is a very frustrating position to be in. Good luck in your journey.

              Comment


                #8
                @JOJO

                Please keep us posted. I was accepted but yes it is still very expensive, but now that is has been approved by FDA maybe some insurances will cover the costs here in the states.
                I left in love, in laughter, and in truth, and wherever truth, love and laughter abide, I am there in spirit.

                Bill Hicks

                Comment

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