Monday, February 1, 2016

New Blog is up!

Click the picture to visit my new blog!

Thursday, November 12, 2015

Be Back Soon; I Feel So Beat

First of all, I want to apologize for not blogging in ages. While I was having my Lemtrada infused I just felt too ill and tired to write so I did some videos. Afterwards, I was so fatigued for a week or two and though I was slowly feeling better my dizziness/vertigo/oscillopsia/whatever was getting worse. Now it is to the point where it is difficult to walk. Just trying to "navigate" around my room causes me to stumble and sometimes even fall (luckily I have a nice soft bed to land on). Even when I am perfectly still thing are swirling. It's also like I just can't focus my eyes! It's horrible, I can not even explain it simply.

Anyways I just feel so defeated in life. I can't catch a break with my health after about 8 months. Social Security finally decided that I do in fact still owe them that 25 thousand dollars because despite the information my doctor provided and notes he wrote they know what disability really is, better than a neurologist who has actually SEEN me. I am 25, I can barely walk, I can't drive, I WANT to work but can't, am struggling with my bills and Social Security doesn't think I even deserve SSI. I don't want to and will do everything I can to avoid filing for bankruptcy because I am only 25! But I am just so burnt out and can't think of a better strategy yet... I keep trying to push myself to blog but I just do not have the energy or motivation to talk about my life right now...

I am going in for Solu-Medrol tomorrow which I have lost all faith in but what can I do? I did Lemtrada, lots of Solu-Medrol, Solu-Cortef, and IVIG. I have tried many other things in the past with no luck so after this, if I see no results, I have to start trying the alternative therapy stuff, mainly cannabis oil is what I am looking at but to get the stuff that has almost no THC and only CBD (no high) is expensive. But I am so desperate! I can't live on like this so either I have to find a way to fix it or deal with it and I really do not WANT to just deal with it... So I don't know, I am just living one day at a time till something changes and then I will have lots to write about.

For now? I am just taking it easy. So I hope everyone is doing well and I will be back as soon as I can. Be sure to check out for my posts there, it's much easier to write about MS when it does not revolve around my daily life.

Saturday, November 7, 2015

My Therapy Report RE Dizziness/Vertigo

Thursday, November 5, 2015

Oscillopsia, Vertigo, BPPV; Trying to Get Back On Track

I am not even sure where to start… it has been so long… hopefully you have watched my videos because the whole Lemtrada thing really killed my motivation to do much writing. That and the oscillopsia/vertigo thing I have been dealing with. As far as Lemtrada side effects go I am feeling fine. Everything feels back to how I felt before Lemtrada so we will see over the next few months if I experience any positive changes.

Now the vision. Since around February (2015) my vision (and resulting balance) have slowly got worse. I was able to do most anything until recently when even walking became difficult. It’s almost like trying to walk on a boat passing through a storm, everything feels like it is moving. Forget driving! Eventually, I started wondering (for multiple reasons) if it was even MS related? Was it Bilateral Paroxysmal Positional Vertigo (BPPV)? When I turn my head to the left while lying on my back a rapid horizontal nystagmus is triggered and if it is positional like that then that would suggest something “mechanical” (like a calcium crystal in the inner ear canal breaking loose and moving around) but that would not explain why I have a difficult time tracking with my eyes when (for example) trying to read from left to right. My eyes “skip” suggesting something is wrong with my vestibuloocular reflex.. Could it really be a combination of MS and something else going on in my ear? What are the odds?

Well, today I saw a physical therapist who specializes in vestibular therapy (and is an instructor on the subject at Loma Linda University) and he did some test to try to figure out what was going on. They have a machine that you stand in front of (well it sort of wraps around you so you can’t see anything in your peripheral vision except the screen) that displays a computer generated environment and also the platform you stand on moves based on how you move. There are different tests; one may track which way you lean based on a moving environment and another causes the platform to shift around based on how much you move and so on. It was horrible because it basically eliminates your sense of balance. Balance is achieved through a combination of vision (it looks like I am upright), vestibular function (it feels like I am upright) and proprioception (the floor feels level against my feet). So the machine messes with these functions to show how strong each is. Since all my senses are kind of weak right now I had a hard time standing up and not falling.

After that we did some positional tests to see if moving my head a certain way would cause nystagmus and guess what? It did. Usually, it’s only one way if it is BPPV, which is how you determine which ear is the problem. I feel it whenever I am in certain positions looking to the left but not only did that cause nystagmus but turning to the right caused another type (different direction)! We did this while I wore special infrared goggles that made everything look pitch black to me, but the goggles had cameras in them that watched my eyes and displayed them live on a computer screen so any eye movements could be seen and recorded.

In the end it looks like it actually is a combination of a crystal that broke free in my ear and MS (I have a lesion in my cerebellum). What sucks is the crystal is stuck somewhere it should not be so we could not fix it with a simple and quick head maneuver such as the “Epley” maneuver. So I have some basic exercises to start working on that will help both the crystal break loose and also the neurological issue. I’ll do this for a while, see how I respond and then add more exercises slowly over time so we can see what each variable in my treatment does.

Hopefully I can fix this sooner than later but he did tell me that it can take anywhere from 6 months to 2 years. Everyone is different.

On top of that I really need to start working on my body’s strength. My quads are so weak now! I can feel my legs trying not to collapse under my own weight as I step up the stairs, which requires one leg to take all the weight while the other steps up. With everything that has been going on with my health lately I am just so unhappy with my body; more so than usual. So I literally have to rebuild myself. It’s hard because it will take a lot of work just to get me to where I was a year ago and then to get from there to where I want to be? This is going to take a lot of work. I have to develop some sort of health routine based on all the physical therapy exercises I have ever learned and all the regular “working out” exercises I know. I hate working out but at this point I hate feeling the way I do even more.

I will be trying to get some sort of blogging routine going again but for a while it’s going to be a lot of short posts just trying to catch everyone up on the stuff I have not written or talked about.

Bare with me!

Tuesday, September 15, 2015

Youtube; Relapse, Cannabis Oil, Starting Lemtrada!

I tried doing a quick video yesterday to announce that I start Lemtrada the week of the 21st. I meant to post this yesterday but I forgot... As I will mention in the video, I am sorry that I seem so fatigued in the video when I talk, thing is I seem exhausted because I am. 6 more days till my first infusion!

Thursday, September 10, 2015

Dizzy, Nauseous, Insomnia, Lemtrada and Cannabis

OK so the last few days have not been all that great. So yes, I have been dizzy and still am. That was not a random episode, this is my new "baseline". I can't say I was throwing up all day but I wanted to. Eating was impossible for a bit; I was so nauseous, I would just stand there salivating as if I was about to vomit but I was able to hold it all down.

- Sorry, I have not been able to think and typing is still so difficult... It has been so hot, even a bath full of ice water does not last very long before melting into a room temperature water... -

I have also been dealing with really bad insomnia for the last few days. 3 Percocet, 2 Benadryl and 2 Klonopin all at once before bed time is still not enough. I would be up wide awake till 3am or so... Luckily last night I picked up some more cannabis extract and though I am still not back on track with sleep I finally got some relief last night.

I see my neurologist tomorrow, not sure what for but it was called in yesterday so I imagine it has to do with the skin check I need before Lemtrada. I will also take care of all my blood work I need. Getting closer yet it still seems so far away.

Anyways, I feel like crap and can't think but I wanted to write down the recent happenings before I forget. I will update some more later.

Saturday, September 5, 2015

I am so Dizzy Today

I was hoping that after that last round of steroids I would slowly see some positive progress in my health. Guess not. I woke up feeling so dizzy today! At first I was in denial but at this point I am certain that I have not been this dizzy ever. I barely move my head left or right and it feels like the world keeps moving even after I stop my head. Tracking my eyes is so difficult; I am typing on the computer and I look up on the screen for an icon of some sort but it takes me forever to find it. It’s like my eyes have to slowly scan every inch of the screen! Reading is not easy either. Walking is miserable; I feel like I am going to fall in whatever direction my body is leaning. My legs feel week, which also makes not falling over hard because I have no strength in my calves to push against my toes to properly orient myself. Still, the worst is the dizziness. I feel so dizzy and almost lightheaded just sitting here not moving a single inch. Again, it’s like I was spinning in a swivel chair and abruptly stopped to try to get up and walk away. As far as my visual acuity goes I feel like there is always a small spot in my vision that I can see through and focus on as if I have tunnel vision and everything outside the walls of this tunnel are blurry and moving instead of dark and black. If I lie down on my stomach propped up on my arms with my eyes closed and my head down I can feel my vestibular system going crazy; everything spins and I am overcome by such a strong sense of g-force. I am really over this crap…

Friday, September 4, 2015

The Burning Fire Called MS

I have had this image in my head for a while that I have been using to describe what I have felt was going on within my body. I wonder if I am the only one who really feels this way? I feel as though “MS” is a small flame that is always burning inside me. This flame represents inflammation and though it may always be there it is usually a small enough flame that no real damage is done, like a pilot light on the stove or water heater. Then I have moments where I am either relapsing or flaring up and to me it feels like that small flame got cranked up to a blaze. So I try to just rest it off but soon the fire is out of control and that is when I need steroids. There may be different means of “containing” a flare up and bringing that blaze back down to a small flame but to me they are all just different sized buckets of water used to extinguish the fire. Solu-Medrol may be the largest bucket of water available and though the flames no longer feel like they are actively burning the damage they did has still yet to be repaired. Point is, right before my 3 days of steroids I could actually feel something going on inside me like when you are getting sick; how you can feel that gross feeling in the back of your throat or deep in your chest. I could feel my body was inflamed but now it doesn’t feel that way, just burnt remains.

Do you feel this way ever?