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Old 10-14-2014, 11:30 AM   #1
TheKdd
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Default My story.

Alright well, gonna try and keep this short since I'm typing from my phone and it's a pita.

You all saw me disappear in the middle of BB. Well, basically what happened was this. My feet went numb for a few days. Scary but I just left it alone, attributed it to bad diet, started eating better. The numbness went away. About a month later it came back. Thought that was weird cause I was still eating well and exercising.

This time though, after about a week of it, it started moving up. In a few hours it was all the way up to my waist. Holy crap I thought and went to the ER. The ER did pretty much zero tests and said "dunno, maybe a bladder infection" and sent me home with antibiotics. It got worse. Went to another ER. They said they needed to do an MRI, but they couldn't today, I needed to come back the next day, make an appt for some time later in the week.

Hmmm. So it gets worse. Pins and needles, numbness, trouble using the restroom.... So another er I go a couple days later. Thank goodness for them. Immediately in the MRI machine. They imaged my whole spine and brain. Turns out I had "Transverse Myelitis"... Look that little nugget up. Basically, my body had decided to turn on me and eat my spinal cord. I was in the hospital a week on a huge dose of meds to stop it. There is no cure. Came home using a walker, moved to a cane, now walking on my own. Still completely numb though. (I can use the restroom myself thank goodness.)

I'm lucky, many people end up with their muscles attacked as well and are paralyzed.

While in the hospital, they did loads of tests. Blood work, spinal tap, etc. the dr believes I now have MS. All markers aren't there, but he believes it's the onset regardless. I only have the one lesion he can see in my back, no lesions in the brain, but a positive spinal fluid for the inflammation.

I can tell you I'm really not taking the diagnosis well, hence my absence. I just don't want to accept it. That and sitting at my computer kinda sucks in the comfortable dept. I'm hoping to get a laptop soon so I can come back easier.

But there you go. Sorry for any typos (I hope there weren't many but my phone you know) but I wanted to explain why I went poof.
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Old 10-14-2014, 01:26 PM   #2
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Damn TK! I mean, just damn!

Well at least you got somewhere that finally did what should have been done by the first stupid ER you visited. So you're saying that the doctor is saying you have the onset of MS even though all the markers aren't there at this time? Shit. Shit.

Well, I'm here. Lurking but I'm here.
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Old 10-14-2014, 02:03 PM   #3
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I don't know what else can be said that I haven't already told you before, but you know you've got a solid family here for you! If you need to vent, feel free. If you want to type nothing but a bunch of gibberish, you can do so. Of course, we'll probably think you're having a stroke on your phone keyboard, but you're welcome to do it! You know that we've got your back. No matter what!
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Old 10-14-2014, 02:52 PM   #4
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Yeah it bites, what can I say. They know of only one lesion on my spine this far, plus my positive spinal fluid for inflammation, both of which are signs of ms. The missing link are lesions in the brain which is the big one and I don't have any. I'm holding out hope that all this is just a random crazy attack of Transverse Myelitis (even though that sucks too) and it's over. One can hope.

In the meantime, they want me on Ms meds immediately, and OMG the side effects and cost are outrageous. Just horrid. That's where I am at the moment. Well that, and hoping my spine will heal so I can feel stuff again below my waist.

You know what else I found interesting? Have you seen the news about all the kids picking up a virus called enterovirus "D68" or whatever and becoming paralyzed? That's Transverse Myelitis that's happening to them caused by the virus. Makes me wonder if an adult can react that way too and that's what I had. Who knows. I just know I really don't want ms.
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Old 10-14-2014, 03:34 PM   #5
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My sister has been living with MS for probably 20 years now. She doesn't take care of herself but if you do, and it's not the worse kind, then you should be okay. I believe there are two kinds. One, like my sister has, comes and goes. The worse kind gets progressively worse. But that's more rare. Either way, if you take care of yourself physically and mentally you will be much better off.
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Old 10-14-2014, 03:46 PM   #6
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WOW, it is completely insane that you had to go to 3 hospitals to finally get a diagnosis. I hate that you are going through this and hope that is not MS. Have you contacted the manufacturers of your medications to see if they can offset the price of your medications.
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Old 10-14-2014, 04:50 PM   #7
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Quote:
Originally Posted by Yellowdog View Post
My sister has been living with MS for probably 20 years now. She doesn't take care of herself but if you do, and it's not the worse kind, then you should be okay. I believe there are two kinds. One, like my sister has, comes and goes. The worse kind gets progressively worse. But that's more rare. Either way, if you take care of yourself physically and mentally you will be much better off.
They told me they believe it's the come and go (relapsing remitting) but these crazy meds they talk about. The side effects are insane.

And Cathy, yes my dr is applying me for some such something with whichever drug I choose to see if I can get it cheaper. But over 5k a month? They really don't want to help people do they.

The dr told me the story about this one drug, was an old cancer drug, on the market for a really really long time. It was hardly prescribed anymore. Very cheap. Then they recently found out it helps MS... The company changed the name and put it out all over again, same everything, just new name, for now 5500 a month in the US.

Sick.
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Old 10-14-2014, 04:51 PM   #8
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TK,

I love you.

Period.
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Old 10-14-2014, 05:52 PM   #9
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Holy shit...I'm so sorry KC!

I don't have much in the advise department, but I am sending you so much love girl. And to your family as well. Wish I could give you a big gay hug....

Will be thinking of you <3
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Old 10-14-2014, 06:48 PM   #10
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The cost of drugs is just plain ridiculous
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