January 3, 2012 Janice had a Tysabri infusion.  After much discussion with her physician we decided to give it a break and see how she did without it.  Again we are weighing all options and risks.  Unfortunately on May 22, 2012 she began relapsing.  May 24, she started a three day IV steroid regime.  May 27 we went into the hospital for five days of plasmapheresis treatment. June 1, she returned to work and by June 9 her symptoms worsened so we returned to the hospital for three days of IVIG treatment this time.  June 15 Tysabri was restarted but much damage has been done which will take much time to heal.  Warning to Tysabri users, be prepared for a major relapse if you stop this drug and no amount of treatment seems to halt the progression.  As for prospective stem cell seekers, you have been provided with the information I have and I hope this allows you to make a more educated decision.

Summer 2011

1) Triathlon completed and still plenty of energy left to smile and look cute!

2) MS fatigue?

3) It's 7:00 AM and the tri-athletes are in the water beginning their swim. (The smart ones are on the beach watching.)

4) Drinks in both hands and tucked under her arm, and the nearest bathroom is a mile and a half away. No wonder she can run so fast!

5) Whats the best way to prepare your feet for miles of swimming, biking and running? Fresh pedicures of course!

I began this blog with the intent of posting stem cell information and updates on Janice’s progress after the stem cell infusion but am thinking it may just take the direction of Janice and her journey with MS. We are now one and a half years post infusion and I am pleased to say that Janice has been doing very well. Two weeks ago she completed the speech-language pathology program at Nevada State College and I couldn’t be happier for her. Her final year taking these courses was amazing. She seemed to be more focused and really enjoyed working with the kids. She remains in great physical shape, continuing with work out sessions daily. She has not had a relapse since July 2009 which pleases me to the ends of this earth.
So back to the question, is it the stem cells, is it Tysabri or is it the gluten free diet? 67% of Tysabri treated patients remained relapse free at two years. That is not 100%. I think we will know better what effect the Tysabri has upon her when it is stopped. Gluten free diet alone has helped her because of her Celiac disease which definitely will slow down the immune response, but for MS it is recommended that one eliminates gluten, dairy and legumes. If I had to guess I would say all three are having equal effects, but that is purely my subjective thoughts. Janice has an MRI scheduled in July.
On June 12, 2011 Janice and her sister Cheryl competed in a triathlon in Redondo Beach, CA and again Janice performed very well. It was her first triathlon with the swimming portion in the ocean. Cheryl, who competed for her very first time in this event, inspired all of us to consider competing as a family next year. (I just said considering this okay?)
Have a great summer. We are all wilting in this Las Vegas heat and are impatiently awaiting autumn's arrival.

http://results.active.com/pages/oneResult.jsp?pID=110558072&rsID=111894&pubID=3

2:00:45

Today was the Las Vegas Marathon. Janice joined over 28,000 runners and ran the half marathon (13.1 miles) in two hours and 45 seconds. That is a very good time but approximately 46 seconds too long in her opinion. She was hoping for under two hours. But 6.55 MPH for two hours is a very competitive pace. Her knee held out perfectly too. Photos from top to bottom:

1) 6:00am stretching prior to Marathon.

2) Finished, and still fresh as a daisy!

3) Back at home with two of her many fans :-)

4) Stretching her tired and sore muscles after

her run.

5) Well earned relaxation with some hot tea tonight.

Update

It has been quite some time since I have given an update on Janice and I am happy to say this is primarily due to the fact that there is not much to report. Janice has been following a gluten free diet due to the celiac, continues with monthly infusions of Tysabri and daily doses of various supplements. She has had no MS flair since July 2009. Yeah team! Unfortunately though, Janice has been nursing a little knee injury. She is not sure how this happened, but it is causing a major problem in her training for the December 2010 Las Vegas Marathon. A recent visit to an orthopedist resulted with a prescription for an anti inflammatory medication and approval to proceed with the marathon. Happy Thanksgiving.

MRI Results

Janice had her brain MRI in July as planned and the results are very exciting. “There is a significant decrease in size and signal intensity of the multiple focal areas of the abnormal increased signal intensity on FLAIR and T2 weighted sequences. . . . These changes are consistent with significant improvement in demyelinating disease. WOW! I read the report with tears in my eyes. This is so exciting.

Now the question remains, what is the contributing factor to these good results. We have the change in diet due to Celiac. We have stem cells which she received in January and third is the continuing Tysabri infusions she receives monthly. Tysabri was started in September 2009 and may decrease lesion size according to literature. I am thinking it may be too soon for the change in diet to have much effect leaving the latter two and honestly I do not know which one is doing the job, perhaps a little of both?

I recently received an email from a friend and oh my goodness, this addresses everything I have been seeking. Dr. Mark Hyman details the steps to take to find the underlying cause of Autoimmune Disease in his article, How to Stop Attacking Yourself: 9 Steps to Heal Autoimmune Disease. I especially love this:

Autoimmune diseases, specifically, now affect 24 million people and include rheumatoid arthritis, lupus, multiple sclerosis, thyroid disease, inflammatory bowel disease, and more. These are often addressed by powerful immune suppressing medication and not by addressing the cause. That's like taking a lot of aspirin while you are standing on a tack. The treatment is not more aspirin or a strong immune suppressant, but removing the tack.

Link: http://www.huffingtonpost.com/dr-mark-hyman/how-to-stop-attacking-you_b_657395.html?view=screen

I have been seeking these causes in Janice but without specific direction. She did get tested for Celiac, and more recently for allergies. Fortunately her allergies consisted mainly of environmental allergens and no foods. Therefore she does not have to eliminate any foods and merely needs to avoid weeds and grasses. I have the list of allergens and soon we will be purchasing a new tree and some plants. We will be avoiding anything on the list that she has reacted to. I am feeling confident that ‘the tack she was standing’ on is Celiac, but she still needs to complete the list of testing he recommends.

How does Janice feel you ask? No change. The numbness remains and she still has fatigue. She continues working full time and attending school. She continues her gym routine and has no visible signs of MS. She looks great.

Celiac

Sorry for the delay in the update here. Unfortunately we have seen no change from the stem cells. We do have other things to write about now though. With encouragement from a good friend, I had Janice tested for Celiac and guess what, the results are positive. Janice does indeed have Celiac disease. Since her diagnosis of MS last year, I have been searching the internet for information on the disease and treatment options and studies that have been done. Now with this new diagnosis, we are putting the two together. Celiac which is also autoimmune, damages the villi in the small intestine. The damaged surface in the lining of the intestine inhibits the ability to digest and absorb nutrients in many if not all foods. As a result, people with untreated celiac disease can suffer from malnutrition. So, with that said, all that vitamin D she has been taking may not be getting absorbed. The only treatment for Celiac at this time is a gluten free diet. Well, since we have seriously considered changing her diet for MS, we decided now would be a good time to start. Our house is slowly turning into a gluten free zone. Janice has completely eliminated gluten from her diet, which she has decided includes gluten free kisses from Ryan. We have tons to learn about this, so with the help friends and internet information, we will get this figured out, and hopefully have a healthy Janice once again.
This statistic is from webMD:
Until fairly recently, celiac disease was considered rare among Americans. In 2003, the results of a large, multi-center study published in the Archives of Internal Medicine found celiac disease in one in 133 Americans. Among those with parents, siblings, or children with celiac disease, up to one in 22 people in the study had it.
Now I am wondering how long Janice has had this, and if it was one little trigger leading to her diagnosis of MS, perhaps due to the autoimmune response in her small intestine and due the lack of absorption of nutrients, especially the all important vitamin D.
Janice has been taking tons of nutrients. With her doctors blessing we have added Curcurmin/Tumeric . I believe that if there has been a study done proving it is effective, and that it causes no harm, why not give it a try. Although the last link posted here, has reservation on the dosage, it is my plan to monitor her closely. So, here are some links:
http://www.mult-sclerosis.org/curcumin.html
http://ms.about.com/b/2009/06/08/hydrangea-root-for-multiple-sclerosis.htm
http://www.eurekalert.org/pub_releases/2009-06/chb-anl060109.php
http://www.ncbi.nlm.nih.gov/pubmed/17569223
More updates as I have more information. Six month post stem cell MRI is to be done in July. Have a wonderful healthy summer.
Melinda

Three Months Post Infusion

It has been three months since the stem cell infusion, and we have not seen any change. Janice has not seen any improvement nor has she regressed.

At her follow up Neuro appointment we discussed the results of her MRV. It was normal. Next we will need to have the doppler study done to further determine if the veins are not occluded.

This past week, we have been discussing alternative therapies. We have discussed nutritional supplements, and even discussed bee sting therapy- although we were not to serious about the latter. Janice has been taking supplements and I continue reading more about the benefits of these. But bee stings?

Last weekend Janice participated in a fund raising event for the diabetes association. Yes it was also the weekend of the MS walk, but she preferred to ride her bike out to the lake for this event. During this event she started one of the alternative therapies. She was stung by a bee- for the first time ever, and I might add that she did quite well with it, only complaining of pain for a short time, stating that she was too busy riding to really notice.

We have updated Prof. Slavin on her condition, and he responded that he is working on newer methods so in the future he may be able to accomplish much more. And he will keep me informed when he will be ready with a second generation of MSCs. We were kind of hoping that round one would do the job, but will be up for a second round if need be.

Melinda