One Year Update

I had my one-year MRI since starting my MS medication, Tecfidera, and it showed that I have new lesions and enlarging of existing lesions in my brain. All that means is my MS is progressing. And so, because of this, my neurologist said I need a “more aggressive treatment plan”. He gave me four booklets of treatment options for progressing MS. Three of the four are IV infusions and one, though is a pill, just came on the market in March 2019 and has the worse side effects of all the treatments. Before we decide which treatment to go with I need a blood panel done because certain existing conditions can be exacerbated with some of the meds. So, this has put a damper on things.

An interesting statistic my neurologist shared with me is, though statistically more Anglo women get MS, men with it seem to progress faster and more aggressively and Hispanic men even more so. I’m half Hispanic so it’s not surprising that my MS is progressing as it is then.

I had a suspicion I might be getting worse just on how I’ve been feeling- extreme fatigue, weakness in my legs and the worsening of my vision. I have optic neuritis in my right eye, but my entire vision is impacted. Even just writing this is difficult, I have a hard time seeing computer screens or small details. Funny story, when I saw my neurologist Monday, he did a vision test, had me cover one eye and asked me to read the letters on the wall. I couldn’t do it and I was moving closer and he had to pull me back because I was getting so close to the wall.

In addition, I had to step down from my job of 12 years in late March because I just couldn’t perform my duties. I was so sad that I had to and still suffer from depression from it, but I know it was for the best. If I was still working there today I would probably be putting myself in danger so it’s for the better. Though I really miss it; mostly the people that I considered family.

So that’s where I’m at. I have a litany of more tests to be done and more doctors to see but in all of this, I’m surviving. And though this is not where I’d imagine my life at 35, I do know and see Christ in my wife’s and my life. I look back to when I first got diagnosed and can see how everything was planned by God to help me today. And knowing that, no matter how awful I feel today I know Christ is with me and will be with us as we move forward. Thank you Christ Jesus.

If you follow this blog I apologize, I haven’t kept up with it. A lot has happened since my last post.

I’ve had many tests since my last post and some of the results are, I have vertigo (though not caused by MS it seems to be exacerbated by my MS) which explains why I’m dizzy a alot. I had a neuropsychology exam which concluded I scored above average where others with MS score below but I do have short term memory issues. Basically, I have to work extra hard to remember things. The worse though is I have optic neuritis in my right eye which explains why I’m half blind when I’ve exerted myself or mid-day comes around. My last MRI in November (2018) was a six-month checkup of starting Tecfidera and it showed a new, but inactive lesion in my brain. However, since it is inactive my neurologist wants to wait until my next MRI in May to see if nothing changes from then before deciding to change my medication. And lastly, I’ve had to step down/quit my job that I held for twelve years because I just couldn’t do it. My last day was March 28. That was the hardest of it all. So yeah, it has been a crazy last six months.

How I feel daily is tiredness and fatigue, dizziness and weakness and a rollercoaster of emotions. With my optic neuritis whenever I exert myself, even minimally I lose my sight. Even just showering causes vision issues. So looking for a job is hard. My wife Tracie is amazing and is now the primary breadwinner and all I can do is stay at home doing chores or help her in her law office as long as I can see. So that is my update.

I do hope to get back blogging regularly, I hope. So stay tuned, please.

I'm such a hypochondriac

So, a (rare) side effect of the medicine I'm on, Tecfidera, is Progressive Multifocal Leukoencephalopathy (PLM); a deadly brain virus. However, when they did the trials of the drug only a handful of the hundreds of thousands of people taking it got it. However, me being the hypochondriac I am, I was sure I had it. So much so I made an emergency appointment with my neurologist because I was sure I was about to die.

I called a few weeks ago and was able to get in this week to see my neurologist and when I told him why I made the appointment he quickly tells me,

"Yes, you have PLM." followed by a smirk and then laughter. He is a good doctor who likes to play with his patients. He then went to reassure me that no, I do not have PLM and gave me the numbers of those who got it from the trials. I was worried because some of the symptoms I have mirrored the virus however they are also similar symptoms of MS, just worse. He continued by having me do walking and reflex tests. I told him what I'm dealing with and then he said they're all MS symptoms and said what my biggest problem is, is anxiety. He reassured me that I'm not dying from the meds and wants me to continue with it.

Whew, I'm not dying, at least not yet. I'm still dealing with the weakness, soreness, dizziness, and all other MS related problems but I'm surviving. He said it was even too early to see if Tecfidera is working and wants me to wait until November to get an MRI because I haven't even been on the meds long enough to know how it's doing. So that was a relief. Though he did break it down for me that with this medication purpose is, it's not to reverse the demyelination of my central nervous system but to stop its progression. Though my body can repair itself to some extent the medicine can't do that. 

however, along with the physical problems of MS, there are also many mental issues. Depression and anxiety were not much of an issue for me before. Sure, life, in general, can be tough but I was always able to handle it (usually with Oreos and ice cream mind you). But now I'm battling high depression and anxiety, so much so that I saw a psychiatrist a few months ago and he put me on some meds. And yes, they are working but I still deal with the continuing mental health issues. Many think "well sure, it's tough to be diagnosed with a dishabilitating disorder like that" but it's more than that. How MS affects your brain can also affect how your hormones act. The releasing of dopamine, endorphins, and oxytocin to name a few are interrupted. And just being diagnosed in the last seven months, not having time to learn how to cope has really just not helped me to learn how to deal with the mental aspect of it.

My doctor thinks though, a lot of my physical issues are MS but also he thinks I'm dealing with a lot of anxiety and that's why I thought I had PLM and dying. What this means is, it's going to be a long journey.

Types of Multiple Sclerosis

There are four types of Multiple Sclerosis that one could be diagnosed with. My doctor said I have Relapsing Remitting (RR) but I think it's really too soon to definitively diagnose me within such a short amount of time. With RR MS you'll have an onset occurrence as I did January 2018 where your symptoms come on, last for a little while and then calm down but one will never get back to where they were before. The relapsing part means I will have another episode later in life but it could be months or years later. I should get better from where I'm at now (I hope) but I'll never return to where I was. 80%-85% of people with Multiple Sclerosis have RR MS.

The second type is Secondary Progressive (SP) where after having RR MS for a while you progress to the point where your symptoms don't plateau and go down but you progressively get worse. This is usually later in life. This happens to 65% of people with RR MS. This could be my future.

The third is Primary Progressive (PP) which makes up 10% of cases. Here one just gradually and continually get worse over time.

The last is Progressive Relapsing (PR) where one will continue to get worse with spikes that will subside but they really don't return to where they were. Though similar to RR MS their symptoms are worse and harder to handle. Though only 5% of people with MS have PR.

Here is a good video describing each type of Multiple Sclerosis:



It's been eight months since the onset and though I am not as bad as I was in January I'm nowhere near where I was before the onset. The hypochondriac in me fears PP MS but only time will tell. I now use a cane in the evening because that's when I'm at my weakest, every time I've fallen it was in the evenings and even now my legs will start to give out on me and I have to catch myself.

Though looking back I had slight symptoms that I had no idea were MS and I got over it in a few months so maybe I will get over this and go a few years before the next episode. Again though, only time will tell.

The Story Begins

To say 2018 has been crazy would be an understatement. “Life Changing” would be the title of my 2018 book but let me back up a bit.

But let’s go back to 2011 when I was at my heaviest, close to 300lbs. That year I was diagnosed with type 2 diabetes, placed on many meds and just all around not living a healthy lifestyle. I tried a few paid weight loss programs: Weight Watchers, Medifast, and sure I lost 20-30lbs each time, but as soon as I stopped I’d gain it back and then some. Then in 2014 I tried a keto diet and again lost about 30lbs but broke it and gained all the weight back. And with each weight gain, my diabetes worsened and brought the threat of severe health issues: vision loss, amputation of feet, kidney failure, and heart problems. I was a mess.

So forward to summer 2017. Diabetes is diagnosed with a three-month average of your Hemoglobin A1C number checked by blood work. A non-diabetic number is anything under 6, and as of that summer my number was 13! I had to do something. I knew I needed to lose weight and a keto diet works if I could stick to it. So Tracie, being the amazing and supportive wife she is, said she’d help. She cooked, prepped and got rid of all the trigger carbs that caused me to fail.

“What is keto?”

Keto is short for Ketogenic. Ketogenic diet/lifestyle is where you put your body into a state of ketosis by producing ketones. Your body’s preferred source of fuel is sugars and carbs, which are the easiest to burn. But the average American diet has way more sugar and carbs that are needed unless you’re Michael Phelps. However, if you limit your sugars and carbs, as in my case no sugars and less than 20 grams of carbohydrates a day, your body changes to start burning its second source of fuel- body fat. The byproduct of burning body fat for fuel are ketones. Ketogenic-ketones-ketosis- KETO! So, August 28, 2017, I decided to begin my Keto lifestyle at a starting weight of 272lbs.

Things went well. Tracie was helping me, I was learning how to adjust to not eating the free donuts at work. Though I didn’t get to the gym as often as I should, being an outside maintenance supervisor, I was walking over 10,000 steps a day so I got my exercise there. With that and the eating lifestyle, weight loss was happening. So much so that by Thanksgiving I lost 50lbs and by Christmas I had lost 60lbs. I was so thrilled! I had to buy new clothes because my 3XL shirts and size 44 shorts weren’t fitting. I was happy. But then New Year’s came.

I had a bad cold during Christmas week which subsided by New Year’s Eve. But then 12 hours later I came down with a bad 24hr stomach flu bug. I thought I was over it all but nope. Once I got over the flu I noticed that I was feeling weak and my legs were wobbly, like jelly. I had numbness on my right side from my abdomen to toes and blurred vision in my right eye. I even fell down my porch one day, my legs just gave out from under me. I went to my doctor and he said maybe I’m not getting enough carbs to sustain me and said try increasing my good carbs to 100 grams. So, I ate more broccoli and greens to see if that would help. But no, I just kept getting weaker. Late January, during my Monday meeting with my boss I told him right after the meeting that I was taking myself to the ER because something’s wrong. I drove to Palomar Hospital, in the middle of the worse flu season San Diego’s seen in years, and had to wait. I was in the waiting room for 5 hours before they could even see me. When I was finally admitted there were no open rooms so they had me wait for another 4 hours on a stretcher in the hallway. It wasn’t until around 1 am that they were able to get me in a room in the ER. Now they had been taking blood work from me and nothing came back drastically out of the ordinary. In fact, because of my weight loss (I was down 70lbs at this point), and not eating sugars and carbs, my Hemoglobin A1C number was 5.4, so the diet was working! But still, with the blood work showing nothing definitive they decided to have me do an MRI.

Now let me tell you, the Geneva Convention dictates how an agreeing country can treat prisoners of war. And though it’s probably not listed, the MRI I went through should be listed. I had to sit still for 90 minutes in a noisy, claustrophobic machine. But I survived.

Once done and back in my room the doctor came in and said they found some spots in my brain but can’t diagnose it fully unless they do a lower lumbar puncture: a spinal tap. This is to get a sample of your spinal fluid to see if there’s anything out of the ordinary. For me though, it just meant more needles. So, as I’m being rolled into the procedure room they’re talking to me, calming me because though I didn’t say anything, I’m sure my face had a look of “DON’T PUT A NEEDLE IN MY BACK!” First, they give a local anesthetic in the back to numb where the needle is going in, so you do feel that. But once it’s numb, the larger, fluid withdrawing needle that goes in doesn’t hurt that much, but you do feel like you’re being shocked a little. My legs would twitch and even kick-up just because they’re near my spinal nerves. But the procedure went well, and they got what they needed. The staff in the procedure room were very nice too, and reflecting I realized it wasn’t that bad. Though I wouldn’t want to do it again. When done I was returned to my room to pack up. By this time, they had a room open upstairs so they moved me to it. It was like going from a Motel 6 to a Hyatt. Still the hospital, but a nice upgrade.

After a while, my doctor finally came in with the results of all the tests. I knew they saw something but had no idea what.

“Hello, Mr. Martinez, we have the results.”

“Yes?”

“It looks like you have Multiple Sclerosis.”

“………WHAT!”

“Yes, based on the MRI, we found legions in your brain and oligoclonal bands in your spinal fluid. It is all indicative of Multiple Sclerosis. We will have a neurologist come in to discuss where to go next.”

I was stunned. What is Multiple Sclerosis? How did I get it? Is it contagious? What do I do? They must be wrong, I couldn’t have Multiple Sclerosis!

Well, I spent a few more days in the hospital because they started me on a multiday IV anti-viral treatment before they knew it was MS and wanted me to complete it. I ended up being in the hospital for five days, being told I have Multiple Sclerosis and have nothing to do but obsess with that knowledge while being in denial about it. However, I do feel blessed because I had a lot of visits from amazing people who really care about me. For all of you who visited me while I was in I thank you, and for all those who were praying for me, I thank you as well. I truly feel loved.

So that was the beginning of my 2018; lose 70lbs – gets diagnosed with Multiple Sclerosis.

What is Multiple Sclerosis? In short, MS is an autoimmune disorder where your immune system is attacking your central nervous system. Your nerves have a protective sheath around them called Myelin and with MS your immune system attacks and scars the Myelin sheath exposing the nerve causing neurological issues; Demyelination. Imagine the copper wire inside your wall, it’s a wire with an insulating protective layer around it so you don’t get shocked. If you were to take a blade and cut into the insulation you would be exposing the bare copper and risk arching or tripping breakers. Somewhat the same thing with MS and your neurological system. Science does not know what causes MS nor is there a cure but there is medicine to help slow down its progression. There’s indication that a lack of Vitamin D can play a role, hence why those who live where they don’t see much sun, like the northern part of the northern hemisphere, have a higher risk of developing it. Why more women than men get it, no idea. But I got it. And it’s not due to my weight loss as many have commented. Looking back, I realize I’ve had it for many years, but the symptoms were so slight that I had no idea what it could be. I just thought everyone gets numb feet, knees give out from under them, or vision problems occasionally. Apparently, those are not normal things.

After they discharged me from the hospital I made an appointment with a local neurologist who specializes in Multiple Sclerosis. I was determined to get a diagnosis of that I didn’t have MS. After waiting on the insurance company to approve the referral I was finally able to get in to see Dr. Benjamin Frishberg at the Neurology Center of Southern California – Escondido. On his exam room wall were awards and a magazine cover highlighting how he is the MS specialist in Southern California. He must be the guy to prove the other doctors wrong; he will know.

He comes in, we greet, he has me do some walking tests, checks my stride. He looks like he’s thinking. I ask, “So, do I have MS?” He says,

“Well, it could be but it could also not be, it’s hard to tell. I want to do another MRI with contrast to be sure.” Great, now more Geneva Convection violations.

I get the MRI scheduled, insurance does their feet dragging thing, and a month later I’m in. But through all of this I’m still dealing with what caused me to go to the hospital to begin with: weak legs, numbness, vision problems, but now I have dizziness to add.

A month later after the MRI I get back to see the neurologist to go over the results. I’m hoping he’ll have better news this time. We chat, he says there’s medication he’d like me to start. I say,

“Wait wait wait, do I have multiple sclerosis or something else? You said you weren’t sure?”

“Oh no, you definitely have multiple sclerosis, every result shows it.”

“…………….”

So there. I’m in Dr. Frishberg’s office with the final confirmation that I, Daniel Martinez, definitively have Multiple Sclerosis. A disease that I had no idea what it was three months ago have it.

He tells me he wants me to start a medicine that will help slow the progression. There is no cure to stop or mend what damage has been done but medical science has come a long way, even in just the last 15 years to help treat MS. I get started on a drug that will hopefully slow down my body from attacking the Myelin sheathing. The catch, I must take it for the rest of my life.

So that has been my 2018 so far. Told you calling it crazy would be an understatement.

So how does MS affect me? Well, if you were to google top 10 signs of MS, I would probably match 9 out of the 10 (I don’t have menstrual issues.) Daily issues I see are again, jelly-like weakness in my legs, vision problems (due to optic neuritis caused by MS), dizziness, extreme fatigue and bodily soreness. And with heat being bad for MS, working outside in the summer months I have no energy when I get home. I sometimes have to take an extra day off just to recover. One morning I woke up and I was so weak and dizzy I couldn’t even get out of bed. I text my guys I wasn’t coming in and literally slept the whole day. MS is not fun.

So what lessons are there to be learned? As a believer in Christ Jesus, where is he in all this?

Well, the first lesson in this is we all are not immune to a bad hand dealt in life. You may be enjoying a Christmas dinner with your family one year, laughing and being merry but the following week you wake up and can barely walk or feel your right side. Bad things happen, whether we think we deserve it or not. Safety in life is not guaranteed.

Second, whether you believe in Christ Jesus as God or don’t believe in a god at all, I can attest to one thing: supernatural, intelligent powers had their hands in all of this. When I started my diet I’m ashamed to say I wasn’t praying about it. It wasn’t that I was trying to leave God out, but my mind just wasn’t focused on having Christ’s help. I was succeeding on my own, and not that I felt like I didn’t need Him, I was just being lazy in my prayer life. But reflecting I realize he was still with me though I wasn’t inviting him. Had I not lost all that weight prior to my diagnosis I very well, with confidence, will say I would not be able to stand or walk right now; I’d be in a wheelchair. With the extra weight I was carrying and how weak I was/am I’m sure of this. God was and is with me, helping me to lose the weight in preparation for what was to come even though I didn’t ask.

“Well, why didn’t he just prevent you from getting MS?”

Like I said, no one is immune to a bad hand, and following Christ Jesus magnifies that. Being a child of God doesn’t mean that you won’t suffer in this world, but it means Christ will always be with you. You may not see it immediately, but know he is there. That is what give you peace.

As for my diet and weight loss, I’ve been able to stick with it. Even though food was always my stress reliever I’ve been able to not revert back and am currently under 200lbs! I don’t think I’ve been this weight since middle school. But I’m not looking at it as a diet but a lifestyle, the days of eating a package of Oreos with ice-cream for dinner are over.

And I must note I have an amazing wife, I just cannot say that enough. Tracie has been such a great source of support and love. I loved her enough to ask for her hand in marriage nine years ago, but you really don’t know a person until you both face challenges. Tracie is a true, true blessing from God.

So, yeah, that’s my 2018 story. I have Multiple Sclerosis, have lost 75lbs, and am praising God.