How I Have Been (Relapse) What’s Next?

The other day I explained how I had been going through a pretty rough patch. I just focused on my depression in thar post, something I have always (for the most part) kept to myself until recently. Obviously, I have expressed that I was feeling depressed in the past, but to me, that was all situational. This time I was talking about something that is just part of my awesome brain (catch the sarcasm?). Well as I said in that post, I finally seem to have a hold of it (as of now) but what I did not really talk about is how my Multiple Sclerosis has just been out of control, in fact, I would say it’s pretty obvious that I am in the middle of a relapse as I type.

I blame the heat of summer. This always happens in some way shape or form come July. But I tried really hard to prepare this year and though my environment (my air-conditioned room) is definitely way better than it was in the past I feel like my MS is just more sensitive to any little change. So I had started eating better, exercising, I finished Lemtrada last year, I started Zinbryta this year, and just did everything I could to better my health and I felt pretty good for a while but then everything seemed to fall apart. For example; I live with fatigue every single day, from the moment I wake up till the moment I try to go to sleep. I don’t remember what it felt like to wake up “well-rested and ready to go”. I now only remember how to power through it with Nuvigil, coffee, green tea, etc. and pretend there is nothing wrong (and usually I do that really well) despite me wanting to lie in bed all day (which is not entirely an option for me). But lately it has been 1,000 times worse, I just have not been able to push through it and take care of everything that I have to take care of.

I started getting really dizzy and my vision started to blur to the point that I could not even read my phone. Again, let me emphasize, this is all more than usual because these are symptoms I live with every single day, they are just usually tame enough that I can work around them and push through it all. I don’t think people really get what I go through every single day, even on a “good” day, because I try to not complain or even make mention of it. If I do that means it has surpassed my ability to “play it off”. Now back to my symptoms, right now it’s like my eyes take forever to focus on something and then when I try to shift my gaze to something else (closer or further) it takes a little longer for them to refocus. It’s like constantly having to manually change the focus on a camera every time the focal length changes. So when you mix all of the above it obviously affects my balance. Trying to get around the house makes me feel like someone who is really bad at parkour. This all came about pretty slowly in the last couple months but in the last week or so it really kicked into overdrive. I am trying to get steroids or Acthar or something but trying to get anything from my neurologist since he moved to this new clinic is basically impossible.

Anyway, as if my fatigue was not bad enough on its own, all the extra difficulty that is going into me completing simple tasks (plus the fatigue I was getting from depression) is just exhausting me. I have been sleeping so much so often! On one hand, I can tell I am having extra difficulties with my cognition just from my MS flaring up but on the other hand I wonder how much worse it is because I am always struggling to keep my eyes open? Although I should say, yeah, I am tired and can barely keep my eyes open but that does not mean it’s “easy” to fall asleep, getting my brain to switch from “awake mode” to “sleep mode” is a pretty difficult chore.

What’s really been on my mind in the last few days is that I am only 27 and I have already been through so much. Will things ever calm down? Will I ever be able to make it a month without everything going to hell? It’s not like there is another treatment that’s any more aggressive than Lemtrada waiting for me… Some would say Ocrelizumab but I am not convinced. So now I wonder if it is time to start really looking into stem cells (HSCT) but I really don’t know. Right now I just really want to get through this relapse (or whatever it is) so I can just really start pushing myself on fitness and diet because I am tired of this. I am tired of feeling like crap every day. There is still so much I can do in the world of alternative medicine and I think it’s time to really start looking more deeply into it all because there is so much I have to offer in life, so much I want to do that I can’t because of where my health is at right now.

20 Responses to How I Have Been (Relapse) What’s Next?

  1. Michael Springer says:

    I have done the alt-med thing. Not much there. Hops tea is good for nausea and vomiting, chamomile is good for strep symptoms, aloe makes burns feel better but not much else. There is a big difference between new symptoms with an “attack” and an increase in or aggravation of existing symptoms due to stress and heat.

    I spent a week with a group of PwMS. It was clear that treatment with stem cells is a very good option. The Norwegian government got tired of waiting for a highly reliable treatment in Europe and the US so they developed their own. Within a month the attacks stopped and function and capacity began to improve. To the point that these people are going from a wheelchair to a cane in less than three months.

    There are groups that have tried to get on board but not all are producing the results you want. When I was looking at stem cell treatment North Western seemed to be leading the pack.

  2. Michael Springer says:

    TED is a good place for ideas. This link will interest you.
    Laura Boyd is a neuro scientist in Vancover, BC.

  3. Becca C says:

    You’re sharing what you’re going through. That in itself is a tremendous help to others like myself.

    You do have so much to offer, and already do, so don’t despair. Depression comes with this damn disease… talking about it doesn’t mean you’re weak; just the opposite, actually.

    You’re right: The holistic approach is best. Conventional medicine, diet and fitness, alternative medicine, etc.

    Hang in there, Matt. And thank you for sharing your experiences.

  4. Jackie Richwine says:

    Matt I can so appreciate your frustration I just spent 6 weeks in the hospital. Thought I was stabilizing to a ” new normal” only to have new symptoms start up this weekend. It is scary for me because I turned 53 this weekend. MS took my career in 2015.
    I have lost my train of thought so I will just leave it to say I feel your frustration & pain so hang tough my MS friend you are not alone.

  5. Loralyn Conover says:

    Thank you for sharing your experiences with us Matt. I am just wondering if you feel

    that it was worth it all? Was taking the lemtrada worth everything you have gone

    through afterwards? Would you have taken it knowing what you know now?. I would

    really like to know as I have had MS for the last 19 years and I am considering

    taking this medication. I would really appreciate anything you may want to share.

    Thank you for your input and keep up the good information.

    Thank you Matt,

    • Matt Allen G says:

      I really am not sure, I mean, what if everything would be even worse right now if I hadn’t? Just so YOU know, lots of other people seem to be doing well after it, their experience was much different than mine so I don’t think I am the best person to judge this drug by

  6. Shaun Paddock says:

    My heart breaks for you. I was diagnosed in 2001 at the age of 38. I have been off of all therapies for almost 5 years and have felt great! I do take Vitamin D and my favorite is Turmeric. My latest MRI did show several new lesions so on Sept 5 at my next appointment, my doctor wants to discuss going back on a drug. My first thought was Lemtrada but after reading about it, I just don’t know. Would you do it again? I have felt great for years other than the fatigue and some leg pain. I don’t walk great but I get by! My mantra is I have MS but MS does not have me. I even have that tatooed on my ankle! I will keep you in my prayers!

    • Matt Allen G says:

      I get that question so often and I never really know how to answer it. All medication affects everyone differently. When I look at how it affected other people it is much different than me. Lots of people seem to do well so I don’t think I am the best person to judge Lemtrada by

      • Loralyn Conover says:

        Thank you Matt, I have a friend from New Zealand who told me that Lemtrada is NOT approved in New Zealand OR the UK because there has not been enough studies on the drug yet. Also the side effects can be terrible….. so now I am really confused. The drug rep told me that after this treatment you are supposed to be done with all other treatments… NO MORE DRUGS TO TAKE, but it sounds like you are still having to take more drugs. I just don’t understand all of this THANK YOU for being honest and forthright about your experiences. I seem to have gotten more information from you than I have from my doctors or anyone else.

        • Matt Allen G says:

          If the drug works perfectly 100% the way it’s supposed to then yeah, you are not supposed to have to do anything afterwards. But it does not seem to have gone that way for me at all

          • Loralyn Conover says:

            What Drug are you on right now and what kind of MS do you have? I have been taking natural anti inflammatory drugs and right now I take Tumeric 1000 mg tablets I also take BioAstin Hawaiian Astaxanthin and Vitamin D3 with Vitamin K which you need to have when taking vitamin D3 These come in 120 caplet bottles and I think that these have REALLY helped me a whole lot. I feel better and my body feels better too. I get these at COSTCO, except the vitamin D3 which I get online from AMAZON. Inflammation is a BIG part of MS. My doctors don’t think it helps but I don’t think they know everything.
            From everything that I have read about MS it starts with inflammation so I am hitting at it there. Thank you for your response Matt!!!

  7. Jen Cataldi says:

    I’m so sick of the failed therapies that I’ve been seriously looking into Ocrevus. I’m on Tecfidera right now and I just can’t cope with the side effects. Copaxone was a joke and everything else looks terrifying. I know Ocrevus can have major complications, but at least it looks effective. I almost don’t care at this point.
    I understand what you’ve been talking about in your last few posts- the deep depression. I also had depression before my diagnosis and now I have multiple frontal lobe lesions that make it even worse. The struggle to take care of yourself, even when it should be top priority, is misunderstood by most people. I get you though.

    • Matt Allen G says:

      Taking care of myself is a full-time job and not one that I feel so great at lately. When I see my neurologist in a few weeks we may discuss a new treatment depending on how he thinks my MRI look, Ocrevus might me on the table.

      • Justino says:

        Matt, Here’s a story about brain fog. I went to a new diner today for lunch.I went to the table and the waiter and then the waiter arrived to me at the table.He said welcome in such a joyful manner that I just awoke from pain and fatigue. When we listen well, we are being healed.Justino

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