I am Back! First 2017 Post! Doing OK-ish?..

Wow. Almost March and this is my first post of 2017. I wish I had a good excuse for why I went M.I.A. for so long but I don’t feel like I do… I mean, life has been crazy; my family and I just moved (only further down the freeway) and as if my health was already not bad enough the move made everything worse. I pushed myself way too hard in an already stressful period of time and then I spent a long time just trying to recover as well as dealing with (possibly) some new health problems. So much has happened that I should have been writing about but I have just not felt so great which means I really did not want to do much of anything but rest. But I finally am starting to feel a lot better and I have pretty much settled into this new place and my new routine so now I am trying to catch up in life and work my way forward. And oh yeah, in January I started working with iConquerMS which I will explain in a minute.

So first let’s talk about the move; although it was stressful and the timing was not at all ideal, I was definitely a little excited for the change. Well, the feeling of a “fresh start” I should say since typically I do not like change. I am without a doubt a creature of habit so this really threw me off my game. There are a few downsides to this new house but those are not only not worth mentioning but insanely outweighed by all the upsides. First the location; we are once again at the edge of town, my favorite part of town, no busy street behind us full of speeding cars, ambulances and firetrucks (from the fire station that was right on the corner). Nope, just an empty golf course at the base of a large hill. Beyond that is the lake and beyond that is… nothing. Just nature and silence. I love it!

The second upside is the house itself; my bedroom is now downstairs, well, really downstairs. This is one of those “kind-of-split-level” houses. There are 3 levels but the lowest is not halfway underground like most split level homes. They basically releveled the ground to fit around the design of the house they wanted to build rather than the other way around. Either way, I am at the very bottom and my bedroom has its own bathroom in it so no more sharing, yay! We also have a pool/spa in the backyard which means during the summer I will not only be able to cool off but I will start trying some pool exercises out too!

The third major upside (and probably the best for me) is that I am pretty sure this new room will be really easy to keep cool during the 110-degree (f) summers we get here in Southern California. This room never gets direct sunlight because it is both facing southwest and is shielded from the sun by the neighbor’s house. Not to mention I am surrounded by other rooms on all three walls, I have the cool earth beneath me and another bedroom above me which means when the house A/C is on the cool air will sink into my room rather than hot air pushing down on me from the poorly vented attic above. My last room had 2 outside walls which got direct sunlight all day and was on the second floor so all the heat from below rose into my room. I was basically surrounded by heat before where now I will be surrounded by cool. This room is also smaller which means the portable A/C I bought for my last room is a bit oversized for this one so when you consider all the other factors I just mentioned it is not going to have to work half as hard as it did before! Last year, with my portable A/C on full blast, I still saw my room hit the 80’s (90 when I tried to not turn my portable A/C on) so I suspect that it will work less and produce more! Oh, I almost forgot, not only does my window not get direct sunlight but it has actual wooden shutters that when shut makes my room almost pitch black so that should help too! So who knows, maybe the house A/C will be enough and I won’t really have to use my portable A/C too much! We will see in a few months!

Alright, let’s move on to all the health stuff; for the most part I have been pretty stable (except after pushing myself too hard during the move). Thing is, I started having some other issues that we have still not really figured out. I started, out of nowhere, losing a ton of weight which most people might be happy about but I am a thin guy so I didn’t have much weight to lose as it was. At first I dropped almost 30 pounds (almost 14kg) in a couple of months so that was freaking me out. We checked for thyroid issues (Lemtrada can cause hyperthyroidism/hypothyroidism) but my levels had not changed since before my first round of Lemtrada. My white count had dropped as well so I stopped Aubagio to see if that was the cause. My white count did go back up but a couple weeks ago my neurologist’s office called to tell me it was back down, “but nothing to worry about”… low enough to warrant a phone call but yeah, I still can’t get my lab results from LabCorp so I have no idea how low “a little low” is and if it has changed since then. I see my neurologist in a few weeks so I will find out then.

Back to my weight loss; at first I thought that maybe it had something to do with Nuvigil (for fatigue) and how it was killing my apatite but I really did not think I was taking it enough to lose that much weight, plus I was still losing weight after I stopped it. I had also noticed that something about my coffee was making my stomach upset… the acid? The dairy in the creamer? So I stopped drinking coffee for a while but no difference. It was really frustrating because I don’t really LOVE to eat, eating is more of a daily chore for me like taking my medicine. So I have been stuffing my face, trying to eat all the right things, counting calories, carbs, fats, protein, everything and STILL I am either losing weight or at best maintaining a low weight but not gaining. I mean jeez, do I have a tapeworm or cancer or what? Now the most obvious first thing to check was my medications but the only thing I have been on for a while now is Atarax Acyclovir which is just an antiviral. But then I really started to think. I was also taking 8,000 IU of vitamin D which after testing my levels, was still barely enough to keep me just below “normal”. But what if something in my body or my diet had changed making 8,000 IU too much? I imagine 8,000 is nowhere near enough to cause vitamin D toxicity (some people take up to 50,000 a day under a doctor’s supervision) but what if? Well, vitamin D toxicity can cause hypercalcemia (too much calcium in the blood) which can cause nausea (check), loss of apatite (check) and weight loss (check). So I stopped taking vitamin D altogether (a blood test would take way too long to get and I was feeling terrible) to see if a “Dr. House” diagnostic test would work; if the symptoms reversed then it meant it was the vitamin D but if they didn’t? It is something else. Now, I just stopped taking vitamin D 9 days ago so it could be a coincidence but I have not been having stomach issues. 9 days is not long enough to really see any actual weight change but I can definitely say that it’s easier to eat now and this morning I took Nuvigil with coffee so hmmm… no nausea or lack of appetite… guess it’s a mystery. We will see if my weight changes in another week or 2 though. Hopefully it really was that simple!..

OK, the last thing I want to talk about today is iConquerMS. iConquerMS is a nonprofit organization that allows people with Multiple Sclerosis (MS) to safely and securely submit their medical information to researchers as well as answer simple surveys that ask questions people in the MS research community are asking. Hopefully, with enough information, researchers may be able to see patterns that will allow them to answer some of the many unanswered questions in the world of MS and ultimately find a cure! After joining, you will also have the ability to submit research topic ideas that you think deserve more attention (if they are even getting attention to begin with). The idea of what iConquerMS is, what it does and what it is trying to accomplish really interests me because what doctors and other professionals in the medical industry see as problems in MS are not always what I (and many other people with MS) see as a priority so this allows us (people with MS) to directly influence what researchers are focusing on. In January I started helping iConquerMS with the social media side of things so if you are on Facebook or Twitter I encourage you to “like” and follow iconquerMS as well as take a few minutes join and complete a couple of surveys (they are broken up so you don’t have to do them all at once). I personally like that once I finish a survey I get to see how other people answered (charts, graphs, etc). Below are all the links you need to find iConquerMS on the web.


iConquerMS Website (Click Here to Join)
Facebook (Click Here to Like)

So I could have spent hours writing about everything I have not written about in the last few months but in the end that would have been too much for people to try to read in one post. Plus, I probably could not remember everything off the top of my head! So ask me lots of questions in the comments below so I know what I should try to include in my next post. I already have a lot in mind (like how I saw a neuro-ophthalmologist last week regarding my nystagmus) but I bet there is even more that everyone will remind me of in the comments! But yeah, I’ll be posting pretty regularly again so you won’t have to wait 3-4 months for another post!

8 Responses to I am Back! First 2017 Post! Doing OK-ish?..

  1. Michael Springer says:

    Good to see you back on line and that some of the changes have been positive. From a palio perspective if you run nude out in the sun for a day your body will produce 50,000u of vitamin D in a 24 hour period.

  2. Angela Shapardanis says:

    Matt,
    In regards to our monthly labs I just call my neurologist office . I have included extension of the medical assistance and of the nurses and they leave a message that I want to know my numbers. Then I say I would like them sent to me and I received them in three days. USers want answers like the two of us do not want to wait for the next doctors appointment. It’s not like going in for Tysabri wherein you see a doctor every month, if not for an appointment, then in passing. I’m glad you’re back online . And I hope your numbers continue to go up. It has taken me three months to be at 315 WBC.

    • Matt Allen G says:

      Sorry for the late reply, I thought I had this issue fixed but guess not; I am not getting ANY alerts regarding new comments, not in my email or on WordPress! I never thought to try calling them to get them. I am not sure if they will be able to release them yet – either way, I will fix this when I see him in 2-3 weeks. 315 or 3.15? “Normal” range is 3.4-10.8 Mine is at its highest 3.4 but sometimes like 2.8 so I don’t know…

  3. Anne Sadow says:

    Hi Matt,
    Thank you for sharing your update on your move. Even though it was a stressful time I am happy to read about your positive outlook on the situation. I am also glad that you mention about the nonprofit organization called iConquerMS. I think that iConquerMS would be a great resources to let others know about and spread support for. Thank you for your post!

  4. Tina Lin says:

    Dear Matt,
    Thank you for sharing your post! I enjoyed reading when you describe the upside of your new place. I love nature as well and I am happy that this house is cooler especially since the summer is coming. Nature is always a powerful medication that brings healing and renews our hearts. 🙂

    I am very sorry to hear about your weight loss and lack of appetite. I want to keep that in my prayer and hopefully it will get better and I also want to pray for your health in general. I am feeling grateful for your heart and effort in contributing to the iConquerMS organization, and my prayer will also include that the researcher will find some valuable answers that can benefit people who have MS. I am really happy for you that you are part of this project. Thank you again for sharing, Matt! I hope things will get better and God bless.

  5. Jess says:

    Matt,

    It’s great to hear that you are settling in with a new routine at your new place, and that that you have found positive changes in the quiet nature and coolness! Thank you so much sharing about iConquerMS. It seems like such a powerful resource to link with the research community, and that you are a part of the conversation and decision making of prioritizing research with your valuable input.

    I really appreciate your honesty and openness. Thank you for sharing your valuable and detailed information about living with MS in each post.

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