Monday, December 7, 2015
Monday, December 07, 2015 No comments
Thursday, November 12, 2015
Thursday, November 12, 2015 BPPV, cannabis, IVIG, multiplesclerosis.net, Oscillopsia, Progress Update, Rebound, Vertigo, Vision 12 comments
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 MultipleSclerosis.net 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
Thursday, November 5, 2015
Thursday, November 05, 2015 BPPV, Lemtrada, Oscillopsia, Progress Update, Vertigo, Vision No comments
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.
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!