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Old 06-26-2009, 10:49 AM #1
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Default just got my diagnosis

...just as the disease started its course.

I'm a 25 year old mom of two (a toddler and a babe) and I'm currently doing some part time work from home. After the birth of my daughter (#2) I had patches of numbness in the legs that came and went, plus a short bout of tingling in the hands that came and went. What sent me to the neuro was when one of my feet turned numb and stayed that way for weeks.

They worked me up for peripheral neuropathy, with everything "okay" until the second attack, which was only two months after the first ended and left me with severe leg weakness, numbness up the whole leg into the behind, and ataxia. I had lost all deep tendon reflexes from both knees down. They suspected either MS or CIDP and told me that my symptoms were atypical of MS but since I was a young female needed to rule it out.

So...after MRIs, SSEP and and LP all within a few weeks, I got my diagnosis. I've been lurking around here since I got my MRI which showed "possible" (their words) demyelinating lesions in the c-spine and one in the brain. I figured I had MS from that point on, even though I was not given a diagnosis until after the LP showed oligoclonal bands. The doc thinks we caught the first of the attacks, that I did not have MS prior to this point.

My first step is to figure things out, med wise... I know I want to be on LDN as soon as possible, with three attacks in 6 months I want to start that asap. I have to wait until Jul.8 to see another neuro who is known for being aware of it and who rx's it. I still haven't decided on the DMDs, I'm leaning towards adding in copaxone once I am on LDN. Also trying to make a decision as to whether to try for another child, since that will obviously affect when i start the copaxone.

eh, enough about me, I hope to start chatting with you all soon. To be honest after lurking here MS seemed a whole lot less scary and I was more accepting of the diagnosis when it finally came.
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Old 06-26-2009, 11:19 AM #2
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Again, Welcome PL.....Sheesh, hate it when a young Parent get this lousy disease.. Congrats on the little ones. They are a handful when your health is a-OK, but with MS, your challenges may be many.

Do you have a supportive Hubby/Family. That would help a lot. So sorry for your DX, but glad you found us. We will be here for you..

Welcome to the Family..
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Old 06-26-2009, 12:05 PM #3
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Welcome! Sorry to hear about the DX, but glad you found us.
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Old 06-26-2009, 12:36 PM #4
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Hi PL and welcome to NeuroTalk. I'm so sorry you got the MS diagnosis.....you're so young. But the good thing is you caught it after the first attack and can get right on a good medication soon. I'm on LDN and love it. Love it, love it, love it.

I hope you'll continue to come here and post. This is a great board and there are lots of very friendly and supportive people here. I don't know if you've visited the Stumble Inn yet or not but that's where we go to get away from MS and just kick back and have fun.
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Old 06-26-2009, 12:54 PM #5
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Quote:
Originally Posted by poetic license View Post
...just as the disease started its course.

I'm a 25 year old mom of two (a toddler and a babe) and I'm currently doing some part time work from home. After the birth of my daughter (#2) I had patches of numbness in the legs that came and went, plus a short bout of tingling in the hands that came and went. What sent me to the neuro was when one of my feet turned numb and stayed that way for weeks.

They worked me up for peripheral neuropathy, with everything "okay" until the second attack, which was only two months after the first ended and left me with severe leg weakness, numbness up the whole leg into the behind, and ataxia. I had lost all deep tendon reflexes from both knees down. They suspected either MS or CIDP and told me that my symptoms were atypical of MS but since I was a young female needed to rule it out.

So...after MRIs, SSEP and and LP all within a few weeks, I got my diagnosis. I've been lurking around here since I got my MRI which showed "possible" (their words) demyelinating lesions in the c-spine and one in the brain. I figured I had MS from that point on, even though I was not given a diagnosis until after the LP showed oligoclonal bands. The doc thinks we caught the first of the attacks, that I did not have MS prior to this point.

My first step is to figure things out, med wise... I know I want to be on LDN as soon as possible, with three attacks in 6 months I want to start that asap. I have to wait until Jul.8 to see another neuro who is known for being aware of it and who rx's it. I still haven't decided on the DMDs, I'm leaning towards adding in copaxone once I am on LDN. Also trying to make a decision as to whether to try for another child, since that will obviously affect when i start the copaxone.

eh, enough about me, I hope to start chatting with you all soon. To be honest after lurking here MS seemed a whole lot less scary and I was more accepting of the diagnosis when it finally came.
Good luck finding a doctor that will write a Rx for LDN. I've been wanting to try it for three years now and so far, no one will give me a Rx. My regular doctor is considering it, but I actually had to make a deal with him just to get him to consider it. The deal was that I start exercising and then go back and see him in a few weeks.

He only said that he'd think about it, and he has to ask my neuro about it first. Argh!

My neuro told me that he doesnt think that LDN does anything, and then went on to tell me that he doesnt think the injectible that he Rx-ed me doesnt do anything either! (great...nice vote of confidence there) So, now I want to quit the Copaxone and just do LDN, since the LDN doesnt require that I stab myself daily to take it. If the C is not going to do anything for me, why ruin my skin taking it?
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Old 06-26-2009, 01:08 PM #6
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Hiya PL!

Welcome to the place you never thought you'd be!
It's good to hear that your neuro thinks that you were diagnosed early. You can purportedly reduce relapses and slow disability with meds now, so finding this early can only be in your favor.

Come on in, set a spell, jump in when you feel comfortable and ask whatever questions you have, someone always answers!
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Old 06-26-2009, 05:51 PM #7
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Welcome!
Sorry you needed to be here, but happy we can be here for you.
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Old 06-26-2009, 05:59 PM #8
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Welcome, nice to meet you, but sorry for your diagnosis. I hope things look up for you moving ahead and you can work with your doctors to your satisfaction.
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Old 06-26-2009, 06:25 PM #9
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Thanks everyone for the warm welcome! I have tons of things I'd love to ask others about and discuss, but we'll see how much I end up getting around to

Quote:
Originally Posted by Riverwild View Post
:
Welcome to the place you never thought you'd be!
Heh, you can say that again! and again, and again.... I started out on the peripheral neuropathy forum. When my ANA, sed rate and similar blood tests came back I naively thought we had ruled out the big bad stuff. Oops, guess not!

Quote:
Originally Posted by Riverwild View Post
:
It's good to hear that your neuro thinks that you were diagnosed early. You can purportedly reduce relapses and slow disability with meds now, so finding this early can only be in your favor.
Yep, this is one thing I am truly grateful for. I also told my mother in law, when I told her about my dx-- "Hey, if I'm gonna have a horrible disease, at least it's one that gets tons of research attention!"
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Old 06-26-2009, 07:17 PM #10
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Hi PL, Welcome to Neurotalk although I wish you didn't have to be here. But glad to know the doctor caught it early. That is some good news. This forum was a life support for me in the beginning months when I was first diagnosed. Lots of great people here. Hope to see you around!
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