[niteshadepromise]

Hi everyone!

My name is Alison and I'm 25 years old and currently undergoing some tests to find out reasons for my wide array of strange symptoms.

I've been suffering from varous numb spots as well as nerve sparks, burning pains, as well as muscle pains, aches, and fatigue most of this summer. It wasn't the first time I had problems, as I had Carpal Tunnel Surgery at the age of 17(which, now that I've been speaking to doctors, was far too early and likely NOT carpal tunnel).
I've spent all summer visiting my mother in Houston, undergoing MRIs and blood tests, looking at a possible MS diagnosis.
I spent most of my time finding solace with other MS sufferers on the MS world forums.

After 6 months of struggling to get tests done and appointments ready(made difficult by not being insured and hurricane Ike), I finally saw a neurologist(Dr. Ashizawa at UTMB) this past Tuesday.
He said my symptoms(along with my MRI of the brain) was not consistent with MS.
He said that he is almost positive I'm suffering from a genetic/hereditary neuromuscular disorder, and now it's just up to having an EMG and genetic testing to figure out which one.

I'm going home to Alabama to see Dr. Oh at UAB to do this, as I have to get back home and working, especially if I'm going to have these crazy medical bills because of this.

We're primarily looking at Hereditary Neuropathy with liability to Pressure Palsies as a cause of my parasthesias and numb spots, and unfortunately, a likely diagnosis of Myotonic Muscular Dystrophy type 2.

It's been a roller coaster ride for sure this summer. I was pointed from the MS World forums to here in hopes that I can find equal support and knowledge to figure out how to deal with this.

I'm a freelance artisan(for now) who loves to draw, sculpt, take pictures, paint, sew, make jewelry, and knit. I love playing video games, fantasy movies and books, and always have to keep busy.
I collect Asian Ball Jointed Dolls, which support many of my above hobbies and are a huge muse of my creativity.
I also love costuming and going to comic cons and ren faires.

I love chocolate and the color purple.
I aspire to go to school to become a hair stylist/make up artist. My dream is to become a comic artist, or at least just be able to work on things I love.
I have a fencing boyfriend who I'm very close to marrying. I want to have a Pirate wedding on a tall mast ship. Doing that would be absolute love.
My favorite music group is Nightwish.
I'm a crazy Disney fan and can likely answer any trivia question.

And...uhm...that's all I can think of.

[Cely]

Originally Posted by niteshadepromise

Hi everyone!

My name is Alison and I'm 25 years old and currently undergoing some tests to find out reasons for my wide array of strange symptoms.

I've been suffering from varous numb spots as well as nerve sparks, burning pains, as well as muscle pains, aches, and fatigue most of this summer. It wasn't the first time I had problems, as I had Carpal Tunnel Surgery at the age of 17(which, now that I've been speaking to doctors, was far too early and likely NOT carpal tunnel).
I've spent all summer visiting my mother in Houston, undergoing MRIs and blood tests, looking at a possible MS diagnosis.
I spent most of my time finding solace with other MS sufferers on the MS world forums.

After 6 months of struggling to get tests done and appointments ready(made difficult by not being insured and hurricane Ike), I finally saw a neurologist(Dr. Ashizawa at UTMB) this past Tuesday.
He said my symptoms(along with my MRI of the brain) was not consistent with MS.
He said that he is almost positive I'm suffering from a genetic/hereditary neuromuscular disorder, and now it's just up to having an EMG and genetic testing to figure out which one.

I'm going home to Alabama to see Dr. Oh at UAB to do this, as I have to get back home and working, especially if I'm going to have these crazy medical bills because of this.

We're primarily looking at Hereditary Neuropathy with liability to Pressure Palsies as a cause of my parasthesias and numb spots, and unfortunately, a likely diagnosis of Myotonic Muscular Dystrophy type 2.

It's been a roller coaster ride for sure this summer. I was pointed from the MS World forums to here in hopes that I can find equal support and knowledge to figure out how to deal with this.

I'm a freelance artisan(for now) who loves to draw, sculpt, take pictures, paint, sew, make jewelry, and knit. I love playing video games, fantasy movies and books, and always have to keep busy.
I collect Asian Ball Jointed Dolls, which support many of my above hobbies and are a huge muse of my creativity.
I also love costuming and going to comic cons and ren faires.

I love chocolate and the color purple.
I aspire to go to school to become a hair stylist/make up artist. My dream is to become a comic artist, or at least just be able to work on things I love.
I have a fencing boyfriend who I'm very close to marrying. I want to have a Pirate wedding on a tall mast ship. Doing that would be absolute love.
My favorite music group is Nightwish.
I'm a crazy Disney fan and can likely answer any trivia question.

And...uhm...that's all I can think of.

I wrote a response to your email and lost it. Any, I said that you seem to have a lot of activities, now wonder your muscles hurt. But I was just kidding. Check into ME, and see if you have all the symptons.

[Kitty]

Hello and welcome to NeuroTalk!

I've included the link to the MS forum for you in case you haven't visited there yet. There's a large MS community here and lots of very nice and supportive people.

http://neurotalk.psychcentral.com/forum17.html

Here's the link to The Stumble Inn where we go to have a little fun.

http://neurotalk.psychcentral.com/forum102.html

[tamiloo]

Wanted to you to Neuro Talk!! So sorry to hear about all your pain and the mystery behind it all...You take care and know that there are a lot of folks here to help in any way they can!!!

[Bannet]

Hi and welcome to NeuroTalk. You do have a awful lot on your plate. I really hope you get some answers soon. Glad you found us.

[niteshadepromise]

Aww! Thank you everyone for the warm welcomes and encouragement! It's very much appreciated!

I figure, despite how much I'm hurting, I really can't let things get me down or slow me down, so I'm really trying to keep up the norm. Once I get the genetic testing done and we narrow down the possible causes, I'll have one step up from my disease.

[Darlene]

Hello and welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help. We are all here to assist each other as possible.

Again welcome, looking forward to seeing you around.

Darlene

[MooseasaurusRex]

One big, warm, tight, hug, handshake and howdy, moose-size official welcome to the site. This place is amazing!

1. It is under better circumstances beautiful. You found us.

B. Moose got the MS 5 years back. I was one of the lucky ones on diagnosis. Only took 3 months. I've met many more who have been in 'limbo' for a year or more.

4. An artist for now? NONOnonono. These shells we occupy and the dents we get in them, we can't let that stop what's inside us. (I gave up and turned to booze instead of choosing to FIGHT BACK. Long story, but I found out the hard way and I am still alive through it all).

Um, 17...? I seem to have lost count. But remember this;

You are not alone.
You are one of us.
And we are here to help.

[weegot5kiz]

Hello and Welcome to Neuro Talk, glad you found us, sorry for the reason, dont hesitate to ask if you need any help, follow those links and post all your concerns, there are a lot of helpful and kind people here, again welcome to NT

[ali12]

Hello and Welcome to Neurotalk!! You will meet many great and supportive people here!!!!

I'm so sorry to hear about everything that you have and are currently going through , I really hope you can get some much needed answers and treatment soon. I think the not knowing part is sometimes worse than knowing what is the matter.

We have a very active MS forum here so I am sure the members there will be more than happy to give you some help and advice and support you when you are feeling down. If you need anything, please don't hesitate to ask, I am more than happy to help you also.

Take care of yourself and I look forward to seeing you around the forum soon!!

Please let us know when you find out what is the matter - I am keeping you in my thoughts.

Alison