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Wife had treatment at Stemgenex 6-22-17

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    Wife had treatment at Stemgenex 6-22-17

    Overall the treatment was a good experience. Everyone involved in providing the treatment was highly professional, upbeat, and the facility was very nice. Transportation to and from the airport, the hotel, and the clinic were included, and this was very helpful.

    My wife didn't experience any side effects from the treatment. She did get more tired than usual due to all of the travel.

    We are cautiously optimistic. The expectation is that it takes at least 6 months to have an idea what benefits one is going to get. This is just 2 weeks in, but we are seeing signs of improvement.

    To give you an idea of her disability before the treatment, here's a brief snapshot:

    - Wheelchair bound, with the ability to xfer for toileting, some assistance needed with bathing and dressing
    - Tremor that inhibits fine motor skills preventing her from self-feeding most foods
    - Gastroparesis (slow emptying stomach) with nausea being controlled by medications
    - Otherwise, quite healthy, 45 years old, healthy weight, non-smoker, and stubborn (this serves her well)

    She had her 2nd Lemtrada infusion in March of this year. There has been no disease progression since starting Lemtrada and no major side effects from the infusions.

    It's early, but here is what we see so far:

    On the flight home I assisted her to the restroom on the plane. Getting her back to her seat I could see an improvement in the quality of the steps she was taking. I don't want to overstate this. I noticed the subtle improvement because I watch her steps all the time. I'm sure the rest of the plane still thought it looked awful. When I got her seated, she said she could already feel improvement in her legs.

    More energy and fewer naps. She has been out of the house and out into the world 4 days in a row now, and attended a holiday party at a neighbor's home that she would not have made 2 weeks prior.

    Better appetite. She is eating more and getting hungry faster. Again, too early to tell, but today she said she is thinking her stomach may be speeding up. We are going to give this some more time before experimenting with stopping the anti-nausea countermeasures.

    I will try to post updates as there is anything worth reporting. If you have any questions, feel free to ask.

    #2
    That's really good news to hear! So, she had stem cell treatment and Lemtrada as well? I'm glad you will be posting updates and hope your wife continues improving! She sounds like a trooper
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

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      #3
      Originally posted by Seasha View Post
      That's really good news to hear! So, she had stem cell treatment and Lemtrada as well? I'm glad you will be posting updates and hope your wife continues improving! She sounds like a trooper
      Yes, Lemtrada 5 days March of 2016. Then 3 days March of 2017. The stem cells she received were an attempt at repair as opposed to HSCT, which is amother immune system reboot, as best I understand it. Today we stopped the 2nd of 3 meds that have controlled her slow emptying stomach. No problems so far. Looks like that got fixed, and quickly.

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        #4
        That sounds great ! I had the 5 day course of Lemtrada in January 2017. Please keep us updated with any changes, positive or not. Any information that you post would be really great and appreciated. Continued good luck !

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          #5
          All three meds that were controlling the gastroparesis have be DC'd for several weeks now. No symtoms. It appears that problem was fixed by the treatment.

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            #6
            Originally posted by Brentorious View Post
            All three meds that were controlling the gastroparesis have be DC'd for several weeks now. No symtoms. It appears that problem was fixed by the treatment.
            Hi Brentorious
            That's very good that stem cell has reversed the progress of MS
            May I ask where this treatment center stemgenex is located?
            Website is very simple and unclear

            Thanks
            Brave

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              #7
              Location of Stemgenex

              Stemgenex is located in La Jolla/San Diego, California (per their website).

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                #8
                Hi Brentorious,
                I want to make sure that I understand the timeline. Your wife had the second round of Lemtrada in March 2017. Then, in June 2017, she had stem cell treatment at Stemgenex. And, as of your post in August, she is improving, drastically!
                I would say that's fantastic. Where is Stemgenex?

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                  #9
                  Saving my money

                  This is a procedure I'm highly interested in pursuing and the price tag seems reasonable but it's good to read such a good experience and I have a goal next year to save up for this treatment.

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