Post #4 XCell-Center Treatment on Feb 4, 2010

At this time we would like to continue sharing our research and experiences related to stem cell treatments with you. This post will describe Mariko's recent stem cell treatment, while the next one will focus on our research regarding stem cell treatments in general, as well as more specific information and impressions regarding XCell-Center in Germany.

Mariko received a stem cell treatment at XCell-Center in Germany on February 4th. Bone marrow was collected on February 2nd, after which the stem cells were isolated from the bone marrow and subsequently implanted on February 4th into the cerebro-spinal fluid by lumbar puncture. Over 4 million stem cells were harvested with a vitality in excess of 90 per cent. The theory is that since the cerebro-spinal fluid circulates, the implanted stem cells are transported directly to the damaged tissue in the brain.

The procedure went well, without incident. However, there were some unexpected side-effects. Although the headache was avoided that sometimes, reportedly, accompanies the treatment, she did experience severe discomfort (severe enough to be considered pain) in the legs and buttocks for 2-3 days. And although the leg discomfort subsided after about the 3rd day, there is still some discomfort in the area of the buttocks (especially when she bends over), almost one week after treatment.

Reportedly, the beneficial effects of the treatment will likely not be felt until sometime during the 2nd or 3rd month following the stem cell implantation. We both remain hopeful there will be noticeable benefits, even though we recognize this is not a cure for the disease, and as such any continuing benefits will be limited due to the degenerative nature of the disease.

It is our objective to post results here as accurately as possible (we recognize that some of our measurement criteria will be somewhat subjective in nature) and on a periodic, somewhat regular basis (at least every 2-4 weeks). If anyone has specific questions for us, we have posted our e-mail address, and we will respond in as timely a manner as possible.

Post #3 Stem Cell Treatments

We have been researching the stem cell therapies that are being carried out in both China and Germany and are seriously considering pursuing treatment in one of those countries. Although recently we have had more contact with the XCell-Center in Germany, we are interested in hearing from anyone, especially with a neurological disease, who has already had stem cell treatments or who knows of someone who has been treated with stem cell therapies. We are interested in hearing from you, regardless of where you might have had the treatments, and regardless of the results. If you prefer writing to us directly, rather than posting below under comments, our e-mail address is fmsalveson@gmail.com.

ANY INFORMATION OR CONTACTS YOU CAN PROVIDE US WITH AT THIS STAGE IN OUR OWN SEARCH FOR ANSWERS WILL BE GREATLY APPRECIATED.

Thank you in advance.

NOTE: We will continue to make updates and changes to this blog, so please check back on at least a periodic basis. We promise that we will keep you as honestly and accurately informed of Mariko's treatment(s) and condition/progress as possible.

Post #2 MSA Diagnosis & History

I first noticed symptoms of what was later diagnosed as MSA-C in August of 2006. I had just moved to Hong Kong for a teaching job and had gotten new glasses shortly after arriving there. I noticed a slight depth of field problem, such as stepping off street curbs and not judging the curb's edge correctly, some periodic blurring of vision, etc. I thought it was the glasses that were the problem and didn't do anything about correcting the problem until the following summer vacation (school holidays--July of 2007)and found that my glasses were not the problem.

I began to follow up with routine blood tests, which were all normal. Then came a series of scans--CT and PET scans in the fall of 2007, which showed a slight deterioration of the right cerebellum, resulting in a generic diagnosis of "cerebellum atrophy", and then an MRI in November of 2008, which resulted in a tentative MSA-C diagnosis. This diagnosis was confirmed by Dr. Fahn of The Neurological Institute at Columbia University Medical Center in New York. Additionally, an autonomic test, conducted during my visit to NYC, showed findings that are consistent with but not specific for early autonomic failure or autonomic neuropathy. Cancer, for now, has been ruled out, based on blood tests and scans that have been performed to date.

Other early signs of a problem, besides the vision issues discussed above, were noted by both my son and my husband. As early as August of 2006, my son helped me with my move to Hong Kong and recalls that he noted that I tended to walk with an abnormally wide stance. My husband joined me in Hong Kong in January of 2007, and he observed the same wide stance that my son says he had noted earlier. Another incident in January of 2007, thinking back, that may have been an overlooked indicator of problems to come was a bowling outing with some of my teaching associates. I guttered roughly every other ball, and I wasn't able to make the necessary adjustments. I now realize that I may have been experiencing the first signs of not being able to control my right hand.

Current symptoms, likely associated with this disease, include:

* Gait difficulties and imbalance
- Wide-based stance for balance
- Use cane when walking or furniture & walls when walking around the house
- Right side of body, including right leg "feels" weaker, at least less control
- Right-sided cerebellar dysmetria, with intention tremor and past-pointing

* Vision
- Still some depth of field difficulties
- Perceived increased sensitivity to bright lights and sunlight
- Hand-eye coordination slower, especially when using right hand

* Hands & Feet/legs
- Difficulty controlling right hand & right leg
- Right handed, but currently write using left hand
- Finger-to-nose and heel-t0-shin are moderately dysmetric on the right, mild on
the left; also dysdiadochokinesia, R>L

* Light headed or faint
- Not dizzy, but sometimes light headed when climb stairs of get up quickly

* Voice
- Mildly slurred; cerebellar speech

* Autonomic Functions
- Mild autonomic dysfunction with likely asymptomatic orthostatic hypotention

* Dreams
- Acting out of dreams is moderate and periodic;
- Talk in sleep sometimes

* Cognition
- Normal

* No Parkinsonian signs
- Tone, power: normal
- Reflexes: reduced
- Plantars: both downgoing

Current Therapies:

Although I am still able to get around with the help of my husband and/or a cane, or by using furniture and walls while walking around the house, my condition has been steadily worsening. I am currently working on my speech difficulties with a speech specialist using the Lee Silverman Voice Treatment (LSVT), as well as beginning Physical Therapy again (I also had some PT while in Hong Kong. In addition, I am in counseling and am looking at the possibility of participating in support groups.

Next Post:

I'm hoping to discuss our search for potential treatments of MSA-C, including stem cell treatments, in my next post. Anyone who has researched or had stem cell treatments is encouraged to post your experiences here, in advance of my next post on the subject, as we are currently investigating stem cell treatment results (anecdotal as well as documented)in contemplation of pursuing stem cell therapies outside of the U.S.