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

Photos from Athens

A little late, but here are some photos from our Athens trip. They are out of order, but from top to bottom here it goes, Top- Cheryl and Janice on the beach in Athens, three days post stem cells. Next is Samira from CTCI holding the two vials of stem cells, just prior to the infusion. The third photo is Janice post infusion. She was feeling great at this time, but that was soon to change. Next, Cheryl and I on our tour of the Acropolis with the Parthenon in the background. The last photo is Cheryl and Janice in front of the Eiffel tower. We had a 12 hour layover in Paris on our way to Greece and took full advantage of our time there.

Two Months Old

Today the stem cells are two months old. So what's new? Nothing that we can tell. We are still optimistic that there will be change but. . .

We have been exploring other options. I have been seriously looking at diet, and supplements. It is looking more like a change in diet is necessary to eliminate the problematic foods that mimic myelin. It's more than I can write about, and I am not sure I understand it all yet, but am working on it. Janice is extremely good about eating a healthy diet. Unfortunately the diet that is needed (or so it seems) for MS, eliminates a lot of good foods. It is basically gluten, dairy and legume free. Janice is not so sure at this point that this is going to be possible and I will support her 100% in her decision.

I found a website, a MS Charity that was founded by a research scientist, Ashtom Embry Ph.d. His son was diagnosed with MS in 1995 and at that time, he decided to research the likely factors which cause MS.

This charity is different from other MS charities, he says -"Our charity is not about coping with the diagnosis of MS – it’s about defying it, slowing or halting its progression, and preventing it in the first place." -That's what I'm talking about!

The link for this charity site Direct MS is: -http://www.direct-ms.org/index.html

Janice had the MRV done Wednesday. We will find out the results on our next follow up appointment in April.

Melinda

Happy Anniversary?

March 7, 2010, It has been one year since the diagnosis. Janice and I talked about this the other day, and she said, "What am I supposed to do, celebrate?"

This past year has taken us on quite the journey. We have been hospitalized three times, taken daily injections, then three times a week injections, then moved on to monthly infusions. We have had numerous MRIs, CT scans, Lumbar punctures, blood tests, vision tests, traveled to San Francisco several times, traveled to Tel Aviv Israel for bone marrow extraction and then to Athens Greece for MSC's infusion. We have had some great doctors and some not so great. Our years' experience has been quite the adventure.

So today we should celebrate. . . the fact that the disease has not progressed any further since last July, the fact that we do have some great docs to care for us, that we can live with this and move on in life and that our God is Great.

Condition Update- No change.

Melinda