3rd anniversary of ms

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3rd anniversary of ms

Postby jimmylegs » Thu Jan 08, 2009 2:51 pm

i was just looking through some files and found these interesting pre-dx messages to my neuro. it's funny and sad. wish i could go back and talk to that girl, she's in full on terrified denial that this could be anything other than the usual b12 problem. she still hasn't realized that there is not going to be any flight to australia happening on feb 2. what a difference 3 years makes!

2006 01 27
hi there, ... thanks for answering my call today.
how did the bloodwork turn out? have you seen any results yet? do i have to go for a schilling test? i also searched on antibodies and parietal cells and now i wonder: you're thinking megaloblastic anemia? i forgot to tell you but my maternal grandmother was severely crippled all her life from rheumatoid arthritis so that's in the history too. anyway the numbness didn't climb any higher today. i went snowboarding after work (wearing a helmet!) i'm gonna go take some b12 now!
thanks for helping me out, have a nice weekend,
***
2006 01 28
hi, hope you're having a nice weekend. we had a beautiful sunny day at the hill, and it was really warm. okay, on to the update. i took b12 this morning, 1000mcg, and i had a terrible day so i just took 1000mcg more b12 (12 hours later). i noticed this morning when i went to put on one of my sweaters, that as i ducked my head while sitting i had a twang in my nerves around my lower back/pelvis. i had problems with that area of my back jolting me all day, even once or twice just standing still talking to people at the bottom of the hill. it feels like electrical current down to my toes, or like if you hit a spring coil with a hammer and it reverberates along, but i only feel it through the numbness. it doesn't hurt, it's just jolty. at one point in the day it felt like the back of my right thigh was wet or something, it felt so different from the usual numb.
on the way home in the car i found if i ducked my head i could make my lower back twang and it's still doing it. walking has been a lot harder today, and i have a dull ache in my lower back. i would say the ache is around the small of my back,to the right of my spine a bit.
my last day at the hill was supposed to be today but they asked me to help out just in case for tomorrow morning only. i said okay but light duty only. let me know if i need to come for any more tests at the hospital! ttyl!
***
2006 01 29
hi i came in for the morning at work and this is for sure the last shift.
since i got up this morning i have lost sensation in my chest and upper back, the backs of my arms, and my outer two fingers on each hand. i can feel sensation decreasing on the inner fingertips of each hand as i type, and my lower back is twitching again. i can still make it happen by bending my neck forward.
***
2006 01 29
> Hi - I/m just reading email now. I think you should come in to MAC and
> be admitted for a better W/U. I can see you on monday. If you do come
> in you will be admitted under internal medicine.
***
2006 01 29
Hi, glad to hear from you. I will take care of my business first
thing in the morning and then pack for the hospital. I tried to get the blood work results today, no joy there. Have you seen a copy yet? Do I have parietal cell abs? I'll call you when I get to Mac tomorrow.
Thanks much,
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Postby cheerleader » Thu Jan 08, 2009 4:05 pm

Interesting reading that, Jimmy...seeing the clear MS signs of L'hermittes and neurological stuff. I think the "run-up" to diagnosis must be one of the traumatic times for MS patients. All of those weird sensations, tests and doctors apts. Especially for someone so young and previously impervious. How scary, not knowing.

Selfishly, I'm glad you took the MS bull by the horns, and began researching what you could do for your health with nutrition and supplements. Can't imagine the past 2 years without you...
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby jimmylegs » Thu Jan 08, 2009 4:46 pm

it is clear as crystal isn't it, it's funny reading how oblivious i was to it all.
thanks a lot for the credit.. but i think the research took me by the horns... i was more than a little obsessed ... and i do mean past tense if you can believe that hehe :) i'm glad i could help you in any possible way cheer - look how far everything's come, and we're so much better off.
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Postby Miss_Feisty » Fri Jan 09, 2009 11:06 am

The messages bring back memories of my own pre-dx denial. I wonder how many people did have denial during that time or if it hit home quickly for some?

During my ordeal which was an emergency at the time I went blank and laid in the MRI thinking of everything I had to do that week. DUH!
The week prior I was overly annoyed with this "pinched nerve" in my back that would not go away. There was too much to do. DUH!
What's that river in Egypt?

Thanks for sharing that, I think we can look back and realize how differently we do feel now, the pros and cons. There are pros if we look really hard.
I know ironically, I've slowed down to a healthier state of being, if I didn't I think a heart attack would have played in my future.

It is refreshing to hear other people's stories because we all have one.
Like I said before, you are a helpful one Jimmylegs and you are appreciated!
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Postby jimmylegs » Fri Jan 09, 2009 11:18 am

exactly, miss. i don't know how many weeks in a row i went around so happy that this happened, to give me a wake-up call about how i was abusing my body, and pushing me into doing something about it!!

There are pros if we look really hard.
I know ironically, I've slowed down to a healthier state of being


thanks miss :) i think it is good, where possible, and where accepted, to try to help ppl get a sense of control over their own fate, rather than having to leave it all to the end of some long drawn-out dx process or medication/treatment approval!
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Postby scoobyjude » Sat Jan 10, 2009 10:29 am

The third anniversary of my dx is 1/17/09. I wasn't in denial at that time because I had had a big exacerbation 2 years prior and was just waiting for the next shoe to drop. Unfortunately, it did. I was in the depths of despair though, sure that I would never be able to go on. I felt furious, helpless and hopeless. It's hard to know how you will deal with a crisis until you are actually faced with one. The biggest lesson that MS has taught me is that I am a lot stronger than I gave myself credit for. I did go on and I know that somehow I will get through all the challenges I face in my life, I just wish they would stop coming. My boyfriend of 9 years was a big source of strength that helped me through the dx and now that he's gone, I have only myself to rely on. It's weird when you get to a point where MS isn't even the biggest problem you have in your life. I never thought I would go a day without crying about my dx. Life does go on though and we have to do all we can to make it the best it can be. My positive attitude was severely tested in 2008 and all I can hope is that 2009 brings us many reasons to be optimistic.
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Postby catfreak » Sat Jan 10, 2009 12:02 pm

Wow JL, I know how you feel. I went along thinking mine was sinus problems and my ENT said to me that my symptoms resembled MS and I should be referred to a Neuro for evaluation.

I basically blocked the words MS from my mind for about a month. This was all during the christmas holidays and I was just too busy to be bothered with this MS thing. About a month or so later I was at work and on the phone with a client and she asked me about my migraines and I went through the spill about how one Dr thought it was sinus and the ENT said no and that I had not been back because if the holidays. She went on to tell me about her daughter and how what I was going through reminded her of what she had been though. As she continued she said that her daughters MS was in remission at the moment.

It was like a slap in the face. I told her that the ENT mentioned MS and that it was so strange that she was telling me about her daughters MS. She urged me to follow up with the Dr.

So I called and spoke with the nurse and ask her to look at my chart to see if there was really any mention of MS or was this all in my head. She said yes it clearly states that you need a referral appt with a Neuro and it for some reason the appt had not been set up yet. Did I want them to go ahead and do this. I was completely speechless. I told them to let me think about it.

At that point I started my research for the right Dr for me, one that specialiazed in MS and not just some neuro out there. My search brought me to a fantastic Neuro that has a special place in his heart for MS patients, his mother suffered with MS and he as a child watched this as he grew up and eventually she passed away. His goal is to treat MS and also to help find a cure for MS.

He has cared for me for six years and the first 5 of those were a dx of probable MS and finally RRMS in April of 2008.

Sorry for the long post.

CF
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Postby Miss_Feisty » Sat Jan 10, 2009 4:21 pm

It's weird when you get to a point where MS isn't even the biggest problem you have in your life.


Scoobyjude.....wow that hit home. I think when we finally feel this way after diagnosis it is the ultimate sign of acceptance.

I try to be optimistic, but there is no denying that the initial dx is such a difficult time. It can be horrifying to say the least. If we can get through that with our head above water, we will survive the rest.

2009, a new year, new hope, new challenges, new goals.
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Postby jimmylegs » Sat Jan 10, 2009 6:45 pm

scoob, cf, miss, yes exactly it's so mindblowing when the news finally sinks in. i felt ... disembodied or something. my personal frame of reference was deleted. and then that time where i was so obsessed i couldn't envision a time i would care about anything outside myself or ms stuff ever again... but yea time teaches us to deal with the new normal and life goes on :) and we've made a bunch of good sympathetic buddies along the way :D :D :D
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Postby catfreak » Sat Jan 10, 2009 9:15 pm

Jimmy, we do learn to deal with that new normal. It's a place that few others understand unless they have been there.

CF
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Postby scoobyjude » Sun Jan 11, 2009 12:19 pm

we do learn to deal with that new normal. It's a place that few others understand unless they have been there.



Wow, that is sooo true. That's why I come here. No one, no matter how sympathetic or empathetic can ever truly understand what we go through. I'm just so glad that I can come here and find so many wonderful people that I can complain and whine to and share my fears and you don't judge me. Thanks to all of you. I don't know what I'd do without you :)
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Postby jimmylegs » Sun Jan 11, 2009 6:16 pm

<hugz>scoob</hugz> and everyone else too :)
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