New Glasses and Still Been Really Fatigued

The other day I finally got my new glasses and wow, it’s amazing how fast you can grow to think that the way you see the world is normal because when I put them on everything is so much more clear! After I first received them and put them on I was walking to the car and I felt like I was going to fall into (through) everything I was looking at; it was like when all the HD TV’s first came out and you would see them on display in the store and everyone thought “wow, it looks like I am looking out a window”. So it took my eyes a couple days to adjust but they seem “stable” now except not really… See, the more fatigued I feel the crazier my vision gets and this last week the “Lemtrada fatigue” has been so horrible so my vision has been all over the place.

As I said before, Ritalin really does not do anything now, in fact, I have not even been taking it. Why put a chemical in me if it isn’t doing anything? I have just been drinking a lot of coffee, which helps me stay awake, but my brain is still running like a car engine that had the oil replaced with tree sap… Miserable. All I want to do is lie down or sleep but I leave for Colorado in 6 days and was kind of hoping to do more with my friends than sleep in their spare room the entire time haha… I really am not too worried though, I think that if I am active and actually doing something I will have no problem staying awake but here at home? In SoCal? When I am stuck in my room because it is already around 90 degrees Fahrenheit (32 Celsius) outside? It is hard to stay “alert” and so I get “tired”…

And because of that, I have to cut this post short; I am so tired! So tired I can’t even think of what I would do if I wasn’t. My eyes are heavy. My body is heavy. Even my thoughts feel heavy. So I will post again soon!

 

Matt Allen G

I was diagnosed with Multiple Sclerosis (MS) in 2010 at the age of 20. It's been a battle ever since and I have always shared my story and struggles online!

8 thoughts on “New Glasses and Still Been Really Fatigued

  • February 11, 2016 at 8:46 pm
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    Hi Matt, I took lemtrada in the phase 3 portion of the clinical trial prior to FDA approval. Five days in 2009, 3 days in 2010, and 3 days in 2011. It didn’t do anything to slow my progression. I was EDSS 3.5 when I started it and now I’m EDSS 6. Since completing the trial I tried Tecfidera but the gastro side effects were too much. Then I tried gelenya. My white blood cell count dropped down to 1800 and the low end of normal is 4000 so I had to stop it also. I did one round of rituxan at my neuro’s request but no improvement. Since then I looked into HSCT (hematopoietic stem cell transplant) aka a bone marrow transplant. In November, 2015 I flew to Israel and had the procedure performed. It’s been about 80 days since I got my stem cells reinfused and I feel like crap. It can take up to two years to find out if it works. If it does then I will have no further MS progression and hopefully PT will help me get a little function back but i’m too weak for PT right now.

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    • February 11, 2016 at 10:15 pm
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      Wow, that’s a battle you got there! Well I definitely wish you luck! I think they are on to something with stem cells but I have heard from many who have had it done that they have to go in every once in a while and have it done again but I don’t know about the different types and how they affect MS

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  • February 11, 2016 at 11:21 pm
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    Good luck with your trip. Yes coffee, it seems to work better than the drug.

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  • February 12, 2016 at 3:03 am
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    Hi Matt! So I’m newly diagnosed MS, specialist is not sure the type yet. My big complaint started back in April 2015 and little did I know why my eyes were so tired; I was trying so hard to focus my eyes all the time! So I have double vision quite a bit especially when fatigued, and nystagmus and blurry vision all the time. I’m wearing prism and it helps, but was having more difficulty again so had eyes checked and no change in eyes just they get fatigued about after 8 hours of use and more quickly if on computer a lot or phone. I’m going to have to figure out my limits and how I’m going to continue to do at work. Haven’t gotten started on my treatment yet, starting with tecfidera.

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    • February 19, 2016 at 7:13 pm
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      Hopefully your vision calms down soon, have they said whether they are doing steroids yet? That is what will make you better, Tecfidera (and other MD drugs) just keep you from getting worse. I mean, you will get better on your own but the steroids speed the process up

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  • February 20, 2016 at 1:13 am
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    Sorry you’re having such a bad time right now. Moms is 75 & has MS. She’s bedridden right now because of a broken ankle. I hate MS. Praying you’re better soon.

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