6 Month Update

Happy 6 Month Birthday, Chris!
It has now been six months since Chris received his new stem cells. It's really hard to believe that it was that long ago.

How did he celebrate? By spending the day at the hospital being poked and prodded of course! (However, he can't really complain, because he did sign up to be part of the research study).

Today ended up being a pretty long day. We arrived at the hospital bright and early, so that Chris could go over the consent forms and ask questions about the study.

Next, he had a "Visual Evoke Potentials' test, which measures the time it takes for nerves to respond to stimulation. This test was at least entertaining (well, for me) as they stuck electrodes to Chris' head and had him stare at a red dot on a computer screen while the background was moving. There was a student there learning about the test, so I ended up getting a bit of a tutorial too! Chris wasn't allowed to listen or talk, so this test probably wasn't as entertaining for him.

After this, I got to hang out in the waiting room while Chris did a speed walking test, distance test, a peg tests (it is exactly how it sounds, Chris had to put pegs in holes) and then some math and cognitive tests. He tested me on some of the questions afterwards and I swear I would fail.

One of the tests was called a PASAT test, which assesses auditory information processing speed and flexibility, as well as calculation ability (it also sounds evil). The examiner will call out a number every 3 or 2 seconds and the patient must add each new digit to the one immediately prior to it.

For example the examiner would call out: 3 then 4 and then you would respond 7, then the examiner would call out 8 and you would need to remember the last number was 4 and call out 12. They repeat this 60 times.

Next, Chris has to do blood work (a lot of blood work, about 20 tubes) and a bunch of eye charts. He also had an Optical Coherence Tomography (OCT) test that measures the thickness of the nerve fibres in the retina of the eye. In order to do this test, Chris needed to have his eyes dilated, which also provided me with a lot of entertainment. It also meant that Chris needed to wear sunglasses for four hours afterwards and wasn't able to see anything upclose. Originally, he had scheduled three meetings after his hospital visit today, but he found out the hard way that he is pretty much out of commission for the day. I ended up needing to drive him around and dial his phone for him so he could cancel all of his meetings.

Finally, Chris had two neurological exams. One exam was from an unbiased neurologist,  who had never met Chris and did not know his history, and the other was with Dr. Freedman, who has evaluated Chris prior to the transplant. The reason for the unbiased neurologist is so that they don't know what to look for and can give a patient an EDSS score without knowing what score you had before.

We had a great experience when we met with Dr. Freedman as he already noticed a difference in Chris! Chris had an MRI after his transplant when he was still in the hospital, so he was able to compare this MRI to an MRI he had a year ago. He was able to show us parts on the scan where the lesions had shrunk. They were not drastically smaller, but the MRI was just under 6 months ago. Who knows what the lesions could look like now?

The best part was when he tested Chris' legs. Last year, when he was testing Chris' leg strength, Dr. Freedman was able to overpower Chris' left leg and push it to the ground. He had marked it down in his notes that Chris had moderate muscle weakness in his left leg. Today, he wasn't even able to tell the difference between Chris' two legs and had to check his notes to remember which leg was weaker. He seemed genuinely shocked that Chris had moderate muscle weakness in his leg before and only six months after his transplant, there didn't seem to be any difference.

We have tried to be really cautious in talking about Chris' improvement (mainly because we didn't want to jinx it), but he really does seem to be doing a lot better.

What a great birthday present!

4 1/2 Month Update

Chris had a week full of appointments this last week.

Last Tuesday, we went to his last transplant appointment. Chris is recovering so well that he has been moved to the MS clinic and will be monitored by Dr. Atkins. His blood work came back much better this month and were all within the "normal range" for a transplant patient.

Next, on the weekend Chris went and had his IVIG transfusion. Unfortunately, I came down with a really bad flu (Chris was taking care of me this time!), so Chris had to go to the appointment alone. The good news is even though he was around me all weekend, he hasn't yet shown any signs of feeling sick. This new immune system he has seems to be immune to my germs.



Chris today vs. Chris in  January. This would have been the difference
 Dr. Atkins would have seen today.



Finally, today Chris had his first appointment with Dr. Atkins and the nurse co-ordinator with the MS clinic. Dr. Atkins had not seen Chris since he was an out-patient in January and when he walked in the door he was really surprised with how great Chris looked.  If you look at the pictures it is a pretty huge difference. We went over Chris' progress to date and it really is great to talk about how far Chris has come in such a short time period. He really is back to feeling how he did before the transplant.

We also learned about a post-transplant study that Chris will start taking part in. In 2010, the Multiple Sclerosis Society of Canada funded a research grant for "Long Term Outcomes Following Immunoablative Therapy and Autologous Stem Cell Transplant for Poor Prognosis MS." This study will follow any MS patients that have undergone a transplant to see if this transplant stops the progression of MS in the long term.

To date, all of the participants in the study have not progressed. Also, they want to see if any of the participants have improved EDSS scores. This is the system that is used to determine the level of disability with MS patients. This means that starting in June Chris will go in for a number of tests and an MRI to track his MS. The test includes a timed walking test, a math test, a vision test, a peg test (you need to place plastic pegs in holes) and, of course blood tests!

While Chris has never had a formal EDSS evaluation, but his neurologist did say he was about a 3.5 on a scale of 10. To give perspective on what that number means, a person with a  5 on scale is able to walk 200 meters without aid or rest, a person with a 7 is completely restricted to a wheelchair , a person with a 9 is completely restricted to a bed, but is able to eat and talk. 

There are people that have undergone the transplant that have improved substantially on the EDSS scale, sometimes going all the way down to 0.5, which means while there are still signs on the MRI scan there are no disabilities present.

We will now be using the blog to update you on Chris' progress, so hopefully the next time we blog in June, we will be able to tell you if Chris is improving!

 

Day 23- Medical Marijuana

Today has been much the same as yesterday. No new illnesses or balding.

So I will use this opportunity to talk about something that I have recently become very passionate about. Yes medical cannabis. Not that I personally need it or use it. But if you were in extreme chronic pain and had to choose between taking large doses of chemical pain killers such as OxyContin and Percocet (which carry the risks of addiction, liver damage and even death) or eat a tasty dessert that has been mixed with a cannabinoid like THC (which has the risk of...........developing a voracious appetite?) I think I would definitely choose the latter. Medical cannabis does not necessarily have to be smoked. It can be administered in many ways, such as vapourizing, drinking, eating and by taking capsules.

Medical cannabis can be used in the treatment of nausea, vomiting, premenstrual syndrome, asthma, migraines, fibromyalgia, arthritis, and is even found to be beneficial in treatment of patients with Alzheimers. Multiple sclerosis has many symptoms that can be treated with medical cannabis such as muscle spasms and pain. As a patient who has multiple sclerosis and is currently going through a stem cell transplant involving high doses of chemotherapy I hope that it is apparent why I have recently become so passionate about the topic of medical cannabis. The anti-nausea medications that I was on after my first dose of chemo had so many side effects that had to be treated with other drugs.  These drugs had side effects that had to be treated with a tertiary line of medications that also had side effects. So if a pill containing THC could be taken instead without any serious side effects, then hand it over.

I am happy I live in a country that is willing to open their eyes and see the benefits of this natural plant. It is legal for licenced practitioners (licenced to practice medicine in Canada) to prescribe medical cannabis. It took a long time to get to this point, but I am definitely proud to be a Canadian.

In the United States, the majority of the US states still do not allow the use of medical cannabis, despite its proven benefits. The US government has even paid to have studies conducted to research the benefits and risks of marijuana. The findings showed that there weren't really any serious risks with using marijuana. It is not an addictive drug and you can't overdose on it. There were many medical benefits that needed to be further researched. But because they have been telling people that marijuana would cause them to commit crimes and want to do other drugs like heroin for so long ,they decided that turning a blind eye to the facts would be the best idea for the American people........or at least for their political agendas. I think that it is wrong to put someone in jail for up to 5 years because they are trying to ease the pain that results from their chronic illness. But enough said. I feel I could go on forever about this topic and I'm probably no longer making sense, so I will end my ranting with a few links for those who are interested in this topic.

http://www.youtube.com/watch?v=2BC2-DuMzoQ

http://www.medicalmarihuana.ca/

http://www.youtube.com/watch?v=bM_vLk1I6G4 (This was an actual anti-marijuana film that was released in 1938 and financed by a church group that intended it to be shown to parents as a morality tale attempting to teach them about the "dangers" of cannabis use.)