Newly diagnosed...

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Newly diagnosed...

Postby LadyDoe » Tue Jan 19, 2010 5:31 am

Hey all :)
I am new to this forum, just like a lot more others.

I was diagnosed with MS on Friday, 15th of January 2010 at 12:30pm at the age of 23. My experience with MS has not been too traumatic thus far as my initial symptoms began on August 31st, 2009 and less than 4 months later, 2 episodes and 3 MRIs, i was diagnosed. My episodes only included numbess and tingling of my limbs, with the occassional weather intolerance. I am currently awaiting the nurse to arrive at 11am tomorrow to show me how to administer copaxone safely as I have no idea how to even begin it.

Just a little background on me, I've completed a degree on Neuro-science - including in depth study on MS and how it is diagnosed and treated. I've also written many case studies on MS patients I was required to assess, but I have now come to realise that what is taught in universities is only a small window into the heterogeneous nature of this disease.

What I have learnt in my university studies is that we are very lucky to be living in an era of MS treatments. Many friends have suffered greatly to this disease due to treatments being 20 years too late for them. Be positive my friends, for we are in this together, we will never be alone!

I look forward to meeting you all xox
... if it's going to be, it's up to me ... :)
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Postby jimmylegs » Tue Jan 19, 2010 5:46 am

welcome LD, i don't think i recall a neuroscientist signing up here before, at least not in my time. it's my pleasure to welcome you to TIMS :)
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby chele83 » Tue Jan 19, 2010 10:29 am

Hi LadyDoe,
Its nice to meet you! I am also new to the forum and I was dx'd 12/22/2009. I am in the process of picking the medicine right now and I'm leaning towards Copaxone!'m trying to learn as much as I can before I make this decision but there is alot to consume. It sounds like you have a pretty in depth background on MS and that is awesome!I ahve a question for you what made you choose Capoxine? Just curious! Mine was actually found due to an accident I was in Feb 14th 2009. So 8 Dr's , 3 mri's and 1 spinal tap oh I shouldn't forget the 3 months of physical therapy :D later here I am. Its very comforting talking to people who are going through the same thing!

Chele
~Dx'd December 22nd 2009~<br /><strong>Why stress over things that can be changed......Change them! <br />Why stress over things that can't be changed.....You can't!<br /></strong>
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Postby dlb » Tue Jan 19, 2010 11:07 am

Welcome LadyDoe.
Your background will be helpful to you in your course of action and invaluable to all of us here, I'm sure. I'm still wowed by the irony - your career & study path and now your recent diagnosis.... Best from another "newbie to the site" & fellow copaxone patient, but not to MS (dx RRMS in July, 2005)

BTW.... I like your signature message!

Deb
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Postby LadyDoe » Tue Jan 19, 2010 8:16 pm

Thank you for the warm welcome, I feel at home already.

Jimmylegs: There’s a first for everything, even neuroscientists register on these forums, I’m sure we have other professionals here too, but it doesn’t matter what your qualifications are, we are all the same in one very special way. :)

Chele: It is VERY comforting interacting with others who share similar experiences, I guess it makes it a lot easier to face knowing that we are not alone in this battle. Also, I chose copaxone after seeing what friends endured on beta-interferon drugs (ie., flu symptoms etc) which I cannot risk due to the many contact hours work and university studies require of me, I also don’t feel comfortable using the special consideration policy, it makes me feel different to others. I don’t know if copaxone is the right treatment for me yet, day 1 of injections and stung more than 10 bee stings in 1 (maybe a slight exaggeration), 30 minutes later and I am not feeling a thing. Bow down to the new king, King Ice-Pack. I also have a friend on copaxone, 6 years thus far and he has not had a single hint of MS symptoms.. this stuffs gotta be good lol

Deb: Heya fellow newbie :) Knowing, understand and researching the theory behind the disease is one thing, but living it is on the opposite end of the spectrum. I don’t think knowing all the extra information from university is really an advantage to me, in fact, it’s what scared me even more to face my diagnosis.

.........if its going to be.......... its up to me (us) ..........
... if it's going to be, it's up to me ... :)
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Postby dlb » Tue Jan 19, 2010 8:35 pm

LadyDoe,

I did think OMG.... when I heard of your studies of MS patients and how scary your dx must have been for you. I understand that because I have a family history & a neighbor with MS. Not good scenes for some & I was scared sh..less to say the least. My GP assured me in the beginning that there is a large percentage of people with MS living normal & productive lives - these are the people that we don't know about. We tend to know about the ones with obvious disabilities. I couldn't believe that in the beginning - I do now. Just wanted to share that man's words of wisdom with you. Like you said earlier - better to be dealing with this now than a few decades ago.

Day 1 of Copaxone.... I remember that scary day too! It is so frightening to be injecting something that we know very little about. And yes it stung but it goes away very quickly. I'm very fortunate that I seldom get an injection site reaction & I've never had one of those weird attacks that they caution us about (I don't even remember what it's called) in 4 years of taking the shots. The ice paks are a big help! I had 1 batch of Copaxone (I had picked up 3 months supply, grrrrr!) and this whole batch was bad - slow to inject & I did have reaction to it. I complained to Shared Solutions, even had them send me a new auto-injector because I thought that was why the slow inj... but it wasn't until I was done the 3 months that I found out from SS that others had problems with that batch. Man, was I upset - it almost drove me to quit! I would pack that batch up & take it back to the pharmacy if that ever happened to me again. Shared Solutions are great - they do look after us, even still call me & I've only really dealt with 2 nurses in the 4 years. Nice to be dealing with the same person. take care...
Deb
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Postby LoveActually » Wed Jan 20, 2010 12:16 pm

Welcome LD! There's a great bunch of people on these forums with a swell of knowledge to share with us all. Glad to have you.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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