From the Beginning


My name is Leslie Hansen and I have Multiple Sclerosis.  This blog is being created so I can share my story and hopefully help others.  I have found that by reading other people's blogs and stories, I become more educated and can make more informed decisions. I'm hoping this will help others do the same.

I am engaged to a wonderful man, Scott Bliss, who helps me get through daily issues and can always make me laugh. Without him, I don't know where I'd be.  Scott is with me during each struggle and has helped me by researching and coming up with the next "game plan". Without him, I wouldn't know half of what may be possible. He is my rock.  

I am a mother to 3 beautiful children, Lauren, Joel and Kate, whom I love more than anything. My kids continuously make me proud.  I'm in awe by how compassionate, smart and strong they are. When it comes to these 3 people, I can honestly say - I did good!   In addition, Scott's son Ryan is an added bonus to my little family tree.  Ryan is so incredibly smart and forever amazes me with his perseverance to achieve his personal goals.  I am truly blessed to have all of them in my life.  

Diagnosis
In December 2014, I started noticing some changes in speech patterns.  Some of the speech issues were as follows:
  • Slurred speech - occasionally, my words would slur and be hard to understand
  • Struggles getting the words out I'd be mid sentence and know what I wanted to say, but the word would get stuck and it would take me a while to vocalize what I wanted to say.
  • Saying the wrong words - this one was strange.  I would be talking and somehow the wrong word choice would happen.  Usually it was a similar sounding word, or a word that starts with the same letters, but has a totally different meaning.  This one is sometimes embarrassing as I come across like an illiterate fool.  
Scott and I thought it may be related to medication I was taking, Azathioprine, and started to do research on the internet to try to find the correlation.  We did not find a correlation, but did find that articles stating that if you're experiencing slurred speech issues, you should go to the emergency room, so I did. I'll talk more about Azathioprine and why I'm on it later, as ultimately, it was probably a big sign that my doctors didn't catch at the time. 

At the ER, they performed multiple blood tests and a CAT scan.  They did not like what they saw on the CAT scan and initially were thinking I had a stroke.  Of course this triggered additional tests, including a lumbar punch and MRI's. 

Lumbar Punch

With this test, they were looking for oligoclonal bands.  Oligoclonal bands are proteins called immunoglobulins. The presence of these proteins indicates inflammation of the central nervous system.  Most people have 0 or 1 bands.  I had 13.  Having o-bands is common for people with MS. With that said, not all people with MS have o-bands.  On the Multiple Sclerosis Discovery Forum website, there is an article entitled "MS Patients Positive for Oligoclonal Bands Have Greater Brain Atrophy" that I recommend you read if interested. 














MRI (Magnetic Resonance Imaging)

I know most people are familiar with what an MRI is, but for those who aren't, it is a process where they use a large magnet, radio waves and a computer to produce images of specific areas (for me the brain and the spine) to visualize damaged areas.  The results of my brain MRI showed multiple lesions and extensive white matter damage.  Below you'll find just a few of my MRI images from December.  The white spots shown are called lesions.

  

On December 29, 2014, I was officially diagnosed with Relapsing-Remitting Multiple Sclerosis (RRMS). 

Okay - so RRMS, what exactly does that mean and what exactly does Multiple Sclerosis effect?  Great questions!!   

I've created a page titled "What is MS?".  Please review this page for a short description of this disease.

Medicating my MS

At the time of diagnosis, my neurologist put me on Copaxone, one of the DMD's (Disease Modifying Drugs) for Multiple Sclerosis.  
Copaxone (Glatiramer Acetate) is a synthetic protein that simulates myelin basic protein, a component of the myelin that insulates nerve fibers in the brain and spinal cord. This drug seems to block myelin-damaging T-cells through a mechanism that is not completely understood.  

In April 2015, I went to have a follow up MRI.  At this point, there was an additional lesion found, but my neurologist didn't know if it was new because that part of my brain was not reviewed from the December MRI, so the decision was made to stay on Copaxone.

In July 2015, I had another follow up MRI.  This time there were 3 new lesions found. Apparently, Copaxone was not doing the job, so I was put on Rebif Rebidose.
Rebif (interferon beta-1a) is a medication manufactured by a biotechnological process from one of the naturally-occurring interferons (a type of protein). It is made up of exactly the same amino acids (major components of proteins) as the interferon beta found in the human body.

While I am still on Rebif, I have had 2 follow up MRI's since April.  
September 2015 MRI - showed an additional lesion and inflammation. 
October 2015 MRI - no additional lesions, but the lesion from September was still there, although slightly smaller, and the inflammation was still ongoing.

Early Signs

Panuveitis

Remember, I said that I was on Azathioprine from earlier in the blog?  About 2 years earlier, I had an episode with my eyes that should've been a big clue.  Scott and I were at a museum and as I was looking at the pictures on the wall, the brightness in the room seemed to increase by about 1,000%.  It was hard for me to look at the pictures as the light was so bright and then I started experiencing extreme pain behind my eyes.  This pain was so intense it made me sick.  I tried shutting my eyes, but the pain was still very intense.  I went to an optometrist that sent me quickly to an ophthalmologist. The ophthalmologist saw inflammation in both of my eyes and immediately sent me to see a retina specialist.   Talk about nervous!!  

My retina specialist informed me that I had Panuveitis.  This is where there is general inflammation that attacks all areas of the eye, including the vitreous humor and the retina. He could see white blood cells all throughout both eyes, with one eye worse than the other.  I had steroid injections into my lower eyelid and had to use steroid drops in both eyes for quite a while.  

This was a trigger to look for other things that could cause inflammation, including cancer, HIV, herpes, MS, etc.  He ordered several blood tests to try to look for what was causing this and we even had a small discussion about MS.  The blood tests came out negative, but we never talked again about MS and I never had tests specific to MS.  After the issue was moderately controlled (a few months), he could still see white blood cells in my eyes, so referred me to a rheumatologist.  This doctor reviewed all my tests and while she had no idea what was causing my issue, prescribed Azathioprine, which is an immune suppressant.  Azathioprine did seem to keep the issue at bay and really wasn't thought about again until I was diagnosed with MS.   

Low Vitamin D


Around 7 years ago, I went in for my yearly check up and my doctor completed the general blood work tests.  At this time, my vit D level was at 8.  The normal range is between 20 to 50.  I took Vit D (50,000 mcg) once a month for 6 months and was retested. I was at a level 30, so all seemed good.

After being diagnosed with RRMS, we rechecked my Vit D level and it was again too low.  I think at that time, it was at a 15, so again put on the 50,000 mcg Vit D meds again.  

When researching causes of MS, I did find that low vitamin D seems to be a recurring issue.  


Other Signs

While harder to recognize upfront, it now seems that the following items were probably related. 

Difficulty concentrating - I started noticing that it was harder for me to stay focused while working and I rationalized this as being a "getting older" thing or potentially perimenopause.  In my head, I thought I am just going through normal aging. Now, I know this is not the case.

Balance issues - I was starting to notice that I was much more leery of walking down hills, or taking those big steps for fear of falling.  Again, I thought - it sure sucks getting old. My balance and coordination are so much worse now, that I think I had early MS and just didn't know.  

The next chapter - HSCT

So now you know the beginning.  Scott was instrumental in finding information related to HSCT, which I've added to a separate page as it's a HUGE part of my journey and will deserve it's own space and attention.  Please review that area to learn all about Hematopoietic stem cell transplantation (HSCT).

Hematopoietic stem cell transplant, HSCT, Multiple Sclerosis, MS, Myelin, Inflammation, Clinica Ruiz, Northwestern University, Chicago, Mexico, Israel, CTCI, Italy Careggi, Russia, Maximov, Avonex, Betaseron, Copaxone , Novantrone , Tysabri, Gilenya ,Tecfidera, DIAD, MRI, EDSS