I'm excited to have found this site!

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I'm excited to have found this site!

Postby Caralea » Wed Oct 21, 2009 9:43 pm

Hello Everyone,
I'm Cara.
I’m very excited to have found this site. My primary tactic for dealing with MS since I was diagnosed in 1993 (I'm 46 now) has been denial and so I didn’t often reach out to others or the internet for information.
This technique worked- for a while. I have tried to live a healthy life and have taken some supplements, I’ve tried copaxone, avonex and now I’ve been on Beta-Seron for over 3 years. Over the past 15 years my symptoms and flare-ups have gotten gradually worse and in spring of 2008 I got the episode that was never supposed to happen to me. With almost total numbness that went all the way up to my neck I also had trouble walking and with hand and arm co-ordination and control for the first time. By the time it was done progressing I had trouble breathing as I felt that there was a boa-constrictor squeezing my chest.
The 7 days of solumedrol did not help at all and the doctor basically just said there was nothing more he could do for me. Suddenly he remembered that people had some success with plasmphorisis and so I ended up in the hospital for 8 days to try this. It did help and I began to get better. It took me over 3 months before I could really get out of bed very easily and about a year to recover as much as I did.
I am now having another flare up that is getting kind of scary. It’s happening really fast and I'm having to start steroids again today.


:cry:
They are horrible! But- Even the first dose seemed to help so I guess it's the right thing to do.
I need to go search for a thread that offers steroid trauma support.

Sorry to go on and on....I'm very glad to have found this support network.
all the best,
Cara
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Postby CRHInv » Thu Oct 22, 2009 2:02 am

Cara,
I am so sorry that life brings you here, but I am so glad you found this place. This place is really amazing. There are so many nice, caring and smart people here. I am also a denial sort of gal. I don't fuss or let on how I really feel at home, I don't want to worry people, especially when there isn't much to be done. But here I can explore my own feelings and get comfort.
Take care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Caralea » Thu Oct 22, 2009 7:03 am

Hello Beth,

Yes, that is a big thing too. I never want to talk about it very much and didn't want to be one of those people that talks about their ailments all the time. ( lol though as you get older that tendency creeps up on you :oops: )

And that was much easier as you said when my symptoms weren't visible. But now it's just a bit harder to ignore. I still don't talk about it too terribly much but I can't really hide the amount of fatigue and the gimpy walk.
:roll: I hate that pity look that you get from strangers sometimes.

So, forgive my ignorance, when you say you received a Stanford appointment do you have a professorship there now?

thanks for the welcome!
Cara
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Postby CRHInv » Thu Oct 22, 2009 9:56 am

So, forgive my ignorance, when you say you received a Stanford appointment do you have a professorship there now?


I have an appointment with Dr. Dake to be evaluated for CCSVI and possibly treated. If you haven't heard of this, you might check out the CCSVI topic here. It is very exciting, but it isn't everyone's cup of tea.

Take care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Caralea » Thu Oct 22, 2009 12:10 pm

CRHInv wrote:
So, forgive my ignorance, when you say you received a Stanford appointment do you have a professorship there now?


I have an appointment with Dr. Dake to be evaluated for CCSVI and possibly treated. If you haven't heard of this, you might check out the CCSVI topic here. It is very exciting, but it isn't everyone's cup of tea.

Take care,
Beth


I actually sounds VERY exciting and I wish that my neurologist seemed more interested in the latest studies. He used to be but I'm getting the feeling that the drug companies seduced him :?

I put in a request for more information and to be a part of the study that I think would just run the tests to see if I have it.

Thanks for telling me about it.
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you were 30

Postby joew » Sun Oct 25, 2009 5:14 pm

ok..hi, im joe..what are you doing at this time? beta? etc?..been to the steroid shop..im older..54...male...got the phonecall march 7, 06...its either m.s. or a brain tumor....i thot....alex, can i get m.s. for 100?...no pity party in this convo...tell me about your travel...joe
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Re: you were 30

Postby Caralea » Sun Oct 25, 2009 7:10 pm

joew wrote:ok..hi, im joe..what are you doing at this time? beta? etc?..been to the steroid shop..im older..54...male...got the phonecall march 7, 06...its either m.s. or a brain tumor....i thot....alex, can i get m.s. for 100?...no pity party in this convo...tell me about your travel...joe


I'm still taking Beta Seron until I can make a decision about some other therapy. I'm doing the steroid taper right now and I am :evil: grumpy woman!!!

The steroids did stop the progression of this flare-up this time so I'm glad for that but every time I do them I think...maybe I should just let it heal on it's own. That episode in the spring of 2008 scared the bee-gee-zee's out of me though. My neurologist told me that I was "dangerously close to death."
That'll get a gal's attention for sure.

So...after that, I'm much more likely to just do what he tells me to for now.
I'm appreciating being able to read up on the many alternatives and when he get's back from Turkey I'm going to meet with him and go over some options.

thanks for the welcome to the site.
Cara
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