Progress Update: Getting Better!

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All right, progress update, been a little behind… I’m doing much, much, better! Seems like the increased steroids I have been on has helped a lot! I can almost run, my hand is doing better, balance is better, even my eyesight is getting a teeny, tiny, bit better, but I have to emphasize, just a teeny bit… I had my monthly neurology checkup today and we decided to taper my prednisone down by half a milligram so I can slowly start getting off of that in a while, and, I had an ophthalmology appointment the other day which was an utter waste of time, in fact, it was a pure waste of life… I already knew that my eyes and optic nerves were healthy, the problem is in my brain! But this guy wouldn’t listen, wouldn’t even humor looking at the peripheral field vision test that I made him a copy of, not even a glance! I really hate Kaiser doctors! So I spent half the day with my eyes dilated for nothing! I’m just going to wait till I see the optometrist again, he seems to be more on top of his game, especially my uncle in Orange county!

So yeah this whole MS things is looking pretty good right now, I think my exacerbation is almost over and at this point I don’t have to say β€œno” to anything I’m invited to, I’m even doing a hike up Mount San Gorgonio in the San Bernardino mountains soon! 11,000 + foot altitude, 3 day hike! Tallest mountain in California, you can see the ocean from on top! I would say I’m at about 80% right now, almost to my remission, yay! As I have mentioned before, I have a completely revised mentality as far as being outgoing is concerned, I am going to do everything I am invited to, travel, go camping, take pictures, and just live a full life! I look forward to the rest of my life!
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15 thoughts on “Progress Update: Getting Better!

  • October 13, 2010 at 11:16 am
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    I'm sooooo happy that you are not letting MS stop you. That is half the battle. You are doing fantastic. Keep up the positive attitude.
    I just went to my Neurologist for a check up on Monday. It has been 4 months since my diagnosis. I'm back on Prednisone. I'm just soooo ready to kick this MS into remission. But the best medication I got was Provigil. WOW did that make a difference. I can actually get through the day soooo much better. I have more energy, my legs are no longer dragging. It is WONDERFUL!!!! Thanks again for the update and blog. Your an inspiration.

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  • October 13, 2010 at 2:39 pm
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    I have never heard of that medication, I'll gave to look into it, if I write an article on it I might ask you for a review lol but yeah Im glad you found something that's helping, lets hope we can kick both our MS's into remission soon!

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  • October 13, 2010 at 3:59 pm
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    I wish I would have got it sooner. This entire experience is new to me. But Provigil is AWESOME! It gave me energy I didn't think I was ever going to have back again. My feet are not 100% but to even have feeling in them again, is such a relief. I will highly recommend this drug if you have numbness in feet and legs and and tired alot. This drug helps!!!

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  • October 14, 2010 at 12:22 am
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    My numness has mostly subsided, the way I feel sensations is not normal but I can interpret hot and cold, it doesn't bug me anymore, but tomorrow Im definitely going to research that medicine!

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  • October 18, 2010 at 6:36 pm
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    Kaiser does suck!!! I feel like I'm getting nowhere with them =
    and I had that same issue with the ophthalmology.

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  • October 19, 2010 at 4:19 am
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    Yeah I really can't wait to switch to someone else someday, Kaiser doesnt have an MS specialist and they wont pay outside of Kaiser so the Dr. I lined up at Loma Linda University is not an option, Im soooooo frustrated with Kaiser!!!!

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  • November 2, 2010 at 5:54 am
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    Same here too, I ran into that same trouble. They want to send me either to like LA or Fontana or SD. I just switched neurologists in Riverside too because none have been proactive for me or even listen =. At my hometown though, I am seen by a wonderful neurologist I'm not fully diagnosed yet though. I have been diagnosed with Probable MS as of 09 but they haven't really been able to see me lately and they only see me when I'm not at my worst so it doesn't really help in my full dx.

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  • November 2, 2010 at 5:55 am
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    Same here too, I ran into that same trouble. They want to send me either to like LA or Fontana or SD. I just switched neurologists in Riverside too because none have been proactive for me or even listen =. At my hometown though, I am seen by a wonderful neurologist I'm not fully diagnosed yet though. I have been diagnosed with Probable MS as of 09 but they haven't really been able to see me lately and they only see me when I'm not at my worst so it doesn't really help in my full dx.

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  • November 4, 2010 at 8:05 pm
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    Probable MS? Have you had a spinal tap /lumbar puncture done yet? That should pretty much confirm it.

    As far as my doctors are concerned I pretty much just do my own research instead of depending on them to teach me, so my doctor's lack o being proactive is ok at the moment because I just tel them what I want done and they tel me the test results lol.

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  • November 5, 2010 at 12:45 am
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    Yeah I had the spinal tap, summer of 09 and hella blood tests. It ruled out everything but the MS, yet they still wouldn't officially Dx me.

    My so cal doctors don't listen to me much at all *feels like I'm talking to an anthropomorphic tree trunk lol*, nor do they seem to care about anything I say to them, so now I have a new neurologist in R-side that I am seeing on the 17th. I hope she'll listen to me.

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  • November 5, 2010 at 4:09 am
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    I hope so to because that's their freekin job! Doctors make me so mad! BuI don't know if you heard but your more likely to get "good" spinal tap results if you get the test done during the peak of an exacerbation because you will have more myelin particles in your cerebral fluid so they will have a better chance of confirming, so idk when you got your test done in relation to your symptoms but that's something to keep in mind.

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  • November 5, 2010 at 4:23 am
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    Ah, so I could try to get another spinal tap done? Would they even do it? and I agree, Dr's bug the heck outta me. Actually they might be able to do it again because they can't see my northern CA Kaiser records, where I got most of my tests done unless I print them out, so maybe I can get that done in Southern CA again. The first time was unsuccessful. =

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  • November 5, 2010 at 5:20 am
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    Yeah you can get it done how ever many time you need, because the thing with MS and spinal taps is that a positive means you have it for sure but a negative means NOTHING! You can have MS and get a negative multiple times on your spinal tap, its all a matter of whether or not they find pieces of myelin in your fluids. So when I got a positive I was actually relieved because I was more worried that I would be battling something without a name/face you know?

    So yeah, when your symptoms are really bad go back in and have them redo it because your symptoms are bad due to myelin deterioration and that damaged myelin ends up in your spinal fluids and that's how they confirm MS.

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  • November 5, 2010 at 6:03 am
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    Ah, I wish I'd known that a long time ago! Lol I'll definitely try and get that done again! Yeah my hometown neurologist said that a negative doesn't mean you have it but my annoying old Riverside one was all like, oh it was negative, you're perfectly healthy, uhhh heck no I'm not healthy, do you see these billions *over-exaggeration* of symptoms I'm having after everything else was ruled out? πŸ˜›

    Yeah I feel like having a definite answer, even if its not always the answer you might have wanted is way better than having an unknown answer. Thanks for the tips πŸ™‚ When I reactivate my old facebook, I'll probably drop you a friend request, because you're helpful and friendly ^^

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  • November 5, 2010 at 2:15 pm
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    Wow really? "Your perfectly healthy"???? wow, again, doctors make me so mad! This is why I do all my own research, doctors dont know anything, they just go to school, memorize what they got to remember to pas their test and then they forget it all so they are no help. Well, SOME doctors…

    But yeah if you get your facebook up send me a request, a lot of people have added me through my blog, Im always here for anyone who needs someone to talk to or needs advise or what ever, take care, good luck, and let me know how it goes!

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