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

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

MRV Canceled

Well today's MRV was canceled due to poor coordination between the doctors office and Nevada Imaging. (That is putting it nicely!) We are rescheduled for March 10. We are still patiently waiting for the stem cells to do their thing. No changes yet.

Melinda

Six Weeks Post Infusion

It has been six weeks since the infusion. Janice has had no change with the numbness to her hands and feet. She says she still has the fatigue . . . . but . . . . Bob and I have noticed a difference. We both feel that her energy level has increased in the past two weeks. She has been out riding her bike more and going for a run almost daily. She is talking about her next triathlon. If there is change, it is very gradual, and she does admit there may be a slight decrease in her fatigue.

Okay, I wrote this today, Thursday which is my day off. I spent the day home enjoying the day, and searching for more information on MS. This evening when Janice came home, she was tired and it showed. She said she was tired all day. So with all that said in the previous paragraph, I am hoping today was just an off day for her.

On a different note, with all the hype about CCSVI, Chronic cerebrospinal venous insufficiency the new discovery of by Dr. Zamboni of Bologna, Italy. my ears perked up a bit and investigative skills slowly kicked in. (With much encouragement from Beth-Thanks Beth)-It's hard to coordinate the different avenues presented but I will continue on until I hear the word "Cure". Janice has an appointment for an MRV on March 4th. Hopefully this test will determine if she has inadequate venous blood flow from the brain causing the iron to build up in her brain. I am finding that the doctors that were initially willing to treat this problem are not accepting new MS patients after a short time. Again, we will stop at nothing in our quest for the cure.

Melinda

Some links to more info regarding CCSVI:

http://www.ccsvi.no/?p=96 MS 'CURE' COMES TO BRITAIN

http://www.ccsvi.no/?p=109 Will drug companies censor possible MS cure?

http://liberation-treatment.com/liberation-treatment/ccsvi Information about the Liberation Treatment for Multiple Sclerosis

Photos in Israel

1) Ryan, Janice, Melinda and Bob outside the Church of the Nativity,

2) Nativity site

3) Bob at one of the stations in Jerusalem, where Jesus fell.

4) Janice and Ryan walking on the beach after bone marrow extraction

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Janice and Dr. Gesundheit and nurse after bone marrow extraction.

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Bone marrow

Worried mom and Ryan in the waiting room

Camel in Israel

Janice, Ryan and Bob floating in the Dead Sea

How Will You Know If It's Working?

How will you know if it’s working? That is the question I get asked often. I wish there was an easy answer to that.

We are now 4 weeks post stem cell infusion. Janice has not felt any difference at all. She still has the same numbness and continues with daily fatigue.

Prior to Janice’s treatment I consulted with Professor Slavin via email. I asked several questions and he would respond to them. I will share this informatin with you from one of those emails.

“For your information, we are now in the process of clinical
application of innovative modalities for the treatment of neurological
disorders focusing on MS and related motor neuron diseases, based on
the use of multi-potential stem cells generated from patient’s own
bone marrow cells or from fat-derived liposuction. However, you and
the treating neurologist should be aware of the fact that we are
dealing with an experimental protocol, so although we promise to do as
much as we can, we can never promise successful outcome. “

“Please note: the treatment we can propose to patients with MS has two
major goals:

• Down-regulation of anti-self reactivity which causes the MS to start with

• Regeneration of neurological functions and enhance re-myelinization “

“The treatment we recommend is based on administration of mesenchymal
stromal cells (MSC) which can be prepared following culturing of
patient’s own bone marrow cells. Alternatively, fat-derived MSCs can
be prepared from liposuction of related [preferred] or even unrelated
donors. MSCs are a multi-potential stem cells that can suppress the
destructive autoimmune process and potentially regenerate lost
functions.”

So with that in mind, I assume that down-regulation of anti-self reactivity may take some time. It may be months or even years before we know if this has occurred.

Regarding the regeneration of neurological functions and enhancing re-myelinization- Since Janice has so many lesions it is hard to know which lesions are causing the numbness and fatigue, and exactly how long it will take to repair the myelin in these areas.

Again, this is experimental, so there are plenty of unanswered questions. We base our confidence on the results that we have documented from those that have gone before us and Professor Slavin’s expertise.

A link regarding the potential use of stem cells for the treatment of MS: http://www.ncbi.nlm.nih.gov/pubmed/18325660?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed

Melinda

Three weeks post infusion

Janice is now three weeks post stem cell infusion and here is an update. She had headache, nausea and vomiting for 3-4 days post infusion, and complained of back pressure for about 2 weeks. Janice is quite flexible, and this was significantly decreased post infusion as bending over to blow dry her hair in an upside down position was impossible. Never did she have a fever.

Today, she is back to pre infusion status. Her flexibility has returned, and she has no negative effects. She has not seen or felt any improvements at all. She still has fatigue, and numbness to her left hand and to somewhat of a lesser degree to both feet. Prof. Slavin said "The effect of MSC's is not rapid. Cells must differentiate and home to target areas so no effect is expected so soon." I am thinking that since she has so many lesions this may take a while. While we are anxious to see results, it will be months, not weeks for the stem cells to do their work.

Of the four girls that received stem cells on that day, the other three all thought they saw change soon after the infusion, although one said it didn’t stay that way for long. We hope to stay in touch with them and we wish them the best possible outcome.

Janice continues working at Enterprise Car Rental, and is in her second semester of the Speech Therapy program at Nevada State College, (where she previously earned her BS). She continues with her exercise although not to the extreme she had done prior to her diagnosis of MS.

Melinda

Stem Cell Infusion, Athens Greece January, 2010

CTCI is awaiting formal approval from the Ministry of Health to infuse stem cells to non- citizens in Israel, therefore the cells must be infused out of the country. We were notified mid-December that Janice was scheduled for her stem cell infusion January 14, 2010. We were elated! We met another gal in Tel Aviv and I couldn’t wait to hear if she got the same news. She did and we were to meet her again in Athens. Then through the MS Forum we learned about another person that was scheduled for the same day and one that was scheduled for Jan. 12, two days prior to us.

We scheduled our flight on Continental Airlines. This time it is going to be Cheryl, Janice and I. Cheryl studied the subway system in Athens and learned all the stops including the one for the hotel, and the hospital. We reserved a triple room in the Airotle Alexandros, which was recommended to us by the travel agent referred by Orit at CTCI. The hotel was quite nice and included breakfast.

Our flight was from Las Vegas to Houston, then on to Paris. We had an 11.5 hour layover in Paris, so we took the subway and toured Paris for the day. It was cold but so beautiful. (Cheryl remembered the subway system from the last time she was there making transportation easy for us.) From Paris we went on Aegean Airlines to Athens Greece. Arriving late at night, the subway was closed but the buses were still running so we hopped on the bus and it took us right to our hotel. This was about a 45 minute bus ride.

Cheryl and I toured Athens the next day while Janice slept. Jan. 14 was the big event. On procedure day, Janice was allowed a light breakfast, so in the restaurant this morning we met a person whom we had talked with on the forum and on the phone. She had received her stem cells on Tuesday and was already headed home and she looked great. We arrived at the hospital, went to the 2nd floor as instructed, and told the security guard who we were. She led us through secured doors to a nurse’s station. The nurses took us to a room and told Janice to pick her bed. Samira from CTCI was there to greet us and told us that the stem cells were being thawed and would be ready in about two hours. There were a total of four people to receive stem cells on this day. We were told they infuse four people on Tuesdays and four on Thursdays. She also said a team of four come together from CTCI inTel Aviv which included Ilan CFO, Samira BSN and two PhD’s that stay with the stem cells in the lab.

Janice had an IV started in her arm, and blood was drawn from this. The neurologist explained the procedure to Janice. Pretty straight forward, the stem cells were injected intrathecally, which took about 2-3 minutes, then she also injected stem cells IV. The entire process took about five minutes. Janice received 61.23 million stem cells IT and 26.33 million IV. Now she is put into the trendelenberg position for the next 3 hours. This was easy for Janice and she was feeling great. At the four hour point she was told it was okay to get up, so she went to the bathroom. Big mistake, as she returned to bed and this was the beginning of a headache that was to stay for the next two days.

Each of the stem cell recipients had a family member stay the night. This is highly recommended, as it is difficult for them to tend to their own needs during the night. We were given a private nurse for the four to share. Her name was Georgia, and she worked hard to make the girls as comfortable as possible. I brought a thermometer, and was so glad I did, because I was able to monitor Janice with this. We also had a little pharmacy of pain and headache medicines, which Janice took liberally but to no avail. We finally decided that perhaps no medicine was best since it didn’t work anyway. I slept on two chairs and a stool all pushed together (Not comfy!) and Cheryl went back to the hotel, returning with fruit for us in the morning.

The next day, a doctor (we presume) came in and asked Janice if she had a headache. Janice had wet cloths on her head and thought this person was going to help her with these so she said yes. This person took Janice’s head and thrust it to her chest, then said “yes, you have a headache.” Apparently this is the way they check for meningitis in Greece.
For some reason Janice’s headache went away briefly and we were able to leave the hospital. Cheryl hailed us a taxi, not an easy task, and we made it back to the hotel just in time for the headache to resume. Nausea and vomiting hit as we were leaving the hospital, but we were so anxious to get out of there, we just dealt with it. This too was to stay with us for 2-3 days.
Janice spent Friday and Saturday in the hotel. Cheryl and I went out for short times, leaving Ryan to babysit – on Skype. If you haven’t discovered Skype, check it out. It is so neat. Janice and Ryan spent hours talking and Ryan even put a video on in his living room, put the computer in front of it and Janice was able to watch a movie like that. Cheryl and I walked in to find Janice sleeping, computer in bed, movie playing.

Seriously though, if you are going to Athens for stem cells, make sure you have the mobile phone number provided to you by CTCI. If you need help call them. That is what they are there for.
Sunday, Cheryl and I took Janice out for a little adventure. We decided a tram ride would be good for her. There is a tram that goes along the coast. Her headache subsided so we went out. About an hour into the trip she started feeling sick, so we got off, Janice expelled the contents of her stomach and we returned to the hotel. She and Ryan skyped that afternoon while Cheryl and I went out again.

Monday we left for home. We were to take Aegean Airlines to Heathrow in London. Upon or arrival in London we discovered our Continental flight had left us. The next flight was Tuesday. Aegean Airlines so kindly offered us 3 hotel rooms, 2 meals each and transfer passes to and from the airport. Since we arrived around noon-ish, we still had plenty of the day left, so off we go, Cheryl and I toured London. Again Cheryl’s expertise with subways shone. Janice was feeling better, but was not in the mood for sight-seeing so she stayed at the hotel, took two baths, and made a facial mask with fruit she had gathered at the buffet. (Give her lemons, she will make lemonade.)

Our book of choice for this adventure was 90 Minutes in Heaven by Don Piper. It is about a Baptist pastor that had a life after death experience and has vivid details about heaven. I also read Modoc, by Ralph Helfer, a true story about a boy and his elephant, another must read.
Janice was feeling fine on Monday. Perhaps a slight headache, but really minor, no nausea this day, but still feeling back pressure and stiffness. No fever.
Thank you to all for the support and prayers we have received. We have the best family in the world. It is so comforting to have the enormous amount of family and friends praying for Janice. Your continued thoughts and prayers are very much appreciated. Again, God has a plan and our faith remains unwavering.

Melinda

Bone Marrow Extraction

Bone Marrow Extraction

Oct 4, 2009. Our trip to Tel Aviv, Israel included Janice and Ryan, Bob and I. It is a memory to be with us forever. We spent a total of five days, visiting the Dead Sea, Mediterranean Sea, Jerusalem, and Bethlehem. Our stay at the Hotel Vital in Tel Aviv was most convenient to CTCI as it is in the same building. Our rooms being on the 5th floor were one elevator ride away from the Doctors office where the bone marrow extraction took place. We met the staff at CTCI and Benjamin Gesundheit MD PhD. He is an associate of Professor Shimon Slavin MD(the brains behind the stem cells). Dr. Gesundheit took a thorough medical history and did a physical exam. He explained the procedure, and expected outcome.

The next day was the bone marrow extraction. Janice was taken into a small room with a beautiful view of Tel Aviv, attached to monitors, sedated via IV with propofol and bone marrow was extracted from her left hip. This is done with a syringe and needle and took all of half an hour. She was awakened immediately after and we drove to a nice restaurant on the beach and enjoyed lunch. After lunch we walked along the beach, one of my favorite memories of this trip, as it was so beautiful and calming. As the four of us walked along the beach that sunny day, I am sure there was only one set of footprints left in the sand.

Janice denied any pain, but thought she might have been slightly sore for a day or two.

Professor Slavin was not in Tel Aviv at the time of our visit therefore we have not yet met him. We were given the grand tour of his office though. He has a beautiful office Top Ichilov at the Weizman Center with views of the city and sea. I found it intriguing that he writes on his windows. In the movie ‘A Beautiful Mind’ John Forbes Nash Jr., a math prodigy/ mathematical genius also wrote on his windows. Now I know it may not be anything but seriously, who writes on their window?
Melinda

Diagnosis/Treatment

Diagnosis

On Thursday March 5, 2009 Janice returned home from the gym and was complaining of numbness to her left arm and left leg. She was uncomfortable and wanted to know what to do. We went to a doctor and described her symptoms. He suggested she follow up with a neurologist. Yeah right! My daughter is the picture of perfect health! She works out daily, participates in triathlons and marathons and eats all the right things!

Saturday March 7, 2009 Janice returned home from the gym, this time complaining of numbness to her left side, and a gripping feeling. Ryan called his physician friend, who is an ER MD at St. Rose Hospital. He suggested Ryan bring Janice in and he would give her the workup. They did just that. Three hours and one MRI later Janice was on her way home with a diagnosis of Multiple Sclerosis and a referral to see a neurologist Monday morning.

Janice’s brain MRI report stated that “there are approximately fifteen T2 FLAIR hyperintense foci throughout the supratentorial white matter. That led to sleepless nights and GOOGLE MS! Well according to several resources, MS may not cause much trouble for years if ever, and people can continue on with normal lives.

Monday March 9, 2009 our first visit to the neurologist. Due to her discomfort level, and to expedite further testing, Janice was admitted to the hospital where she received 5 days of steroid treatment and further tests. It is now official. Janice is diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS). After this treatment she was feeling pretty normal again and had started taking a drug for MS called Copaxone. This was to be short lived.

By the end of the month, Janice was having a relapse. Her symptoms included more numbness, fatigue, forgetful, repeating herself, drawn out speech, and with each day adding a new symptom, left foot dragging, and eventually fell into the bathtub, with no intention of even taking a bath. During this relapse Janice had uncontrolled giggles so we laughed ourselves silly, leaving us with fond memories and embarrassing moments. We laughed 'till we cried. Then I cried some more. Because of her difficulty with balance during this episode, one of our memories is all the crooked pictures hanging on the walls of our house.

April 7, 2009, Back to the hospital! This time the treatment is steroids to be followed by plasmapheresis. The brain MRI states “there are too many to count bilateral white matter lesions.” She also had a spine MRI which was normal (thank goodness for a normal one, ‘cause this mama is loosing it). In a 30 day span, her MRI’s went from 15 lesions to “too many to count”!
After this hospital stay, Janice is feeling pretty good again, and in June starts taking a different MS drug called Rebif.

July brings on another event. Janice has the numbness to her left side which we now know as the MS hug. (Isn’t that lovely) fatigue, vertigo, and now numbness to her head. Brain MRI shows more lesions. Is it possible? Spine MRI, normal (whew!). This time we did a treatment of oral steroids, but the results are not good enough so we go back to the hospital for plasmapharesis.

In September, 2009 Janice starts on another MS drug called Tysabri. This is given IV once a month. It works! Hallelujah! Since this first dose, Janice has not had a relapse. BUT, this little miracle drug has a wicked and nasty side effect called “PML” (Progressive Multifocal Leukoencephalopathy). PML is a virus that attacks the brain, is often fatal, and has no cure. To be honest the virus is fairly rare, but the outcome so bad that it is a serious consideration for those taking Tysabri. We know early on that we can only allow Janice a limited time taking this drug. So the question remains, how do we continue to fight this disease for the long haul?
Melinda

About Us

My name is Melinda and I am the mother of three kids, Cheryl, Janice and Brad. My kids are great, and I love them dearly. (I know-that's a mom speaking). Last year Janice was diagnosed with Multiple Sclerosis. God has a plan. We know that He has chosen Janice for a reason. It was so heart wrenching to have this diagnosis join us for a lifetime, but I know He is in control and will take care of our family. After the initial shock of the diagnosis, I began my search for treatment and support for my daughter. In doing so, I came across the MSWorld forum. It was there I discovered that there are many people with MS, all so very willing to share their experiences, and all wishing for a better treatment available to them. These people have become very dear to me. My daughter was diagnosed with MS in March 2009, and after several relapses, I discovered a treatment that many people were doing. Stem Cells! I remember after discovering this thread on the MS Forum in July feeling like there was some hope to slow down the progression of MS, and together (Janice and I, Ryan and Bob our S/Os) started exploring this treatment more seriously. We discovered that there are several places worldwide offering stem cell treatments, and after learning more about each, we sought out more information on the procedure done at International Center for Cell Therapy and Cancer Immunotherapy.

I feel gratitude to those who went before us, paving the way, and posting with great detail, step by step information on how to contact Professor Slavin, details of their own experiences and any information they have gained regarding this. With this information, Janice and I agreed we must give it a try. The purpose of this blog (with Janice's permission) is to keep our family, friends and fellow MSers informed of Janice's progress, and perhaps expose others to new ideas. - Melinda