Do I fit here or am i just weird?
 

hi,

Well it is 6:30 am and I just got that WEIRD pins and needles down the arm and then down the spine 30 sec later with my head tucked forward snuggling up with my teddy bear.

(yes I'm 24 but i use the bear (or a big pillow) b/c my face tends to fall into the head pillow if i don't b/c i can't balance when laying down on my side - muscles are too tense and ridgid and pull and contrort me in all different ways, esp. at night).

the pins and needles sensation Woke me up out of a sound sleep dang it! :eek: So i come over to the computer hoping for solace and answers to the questions of life. :wink:

i know i haven't been dx yet. Hence the question in the subject line. I call my neuro today and see what kind of tests they will run tomorrow during my appointment.

I sent him an email friday with the sx that i just considered wayyyyy too weird to mention to the neuro.

I showed my family the email last night and dang it, my family said that I was leaving out words and scrambling syntax all over the place! I thought it made perfect sense and i still wouldn't have a clue how to edit the thing!

Sooooo I don't know if he will be able to despher my hyrogliphics or not! (that is what my college friends and i call it when my writing makes no sense to them and i become the translator).

I fortunately have a neuropsychologist friend of mine that is hopefully going to work with my neruo to see if they can fig. me out. btw the neruopsychologist was my major prof. in college that supervised my senior thesis.

he has known me for 5 years and he CAN read my hieroglyphics :wink: (i have sent him enough emails over the years). :D

So life in limbo land continues and hopefully friday's email to the neuro will give him some leads to check out, and we can get some answers.

Normally my neuro does not accept emails from paitents. however, i talked with his secretary and mentioned a couple of the weirdies, as i call them, to her. the sx that i always kept quiet about.

and she immediately gave me his email and asked me to email him the word doc on my computer that had the list of the werdies.

that is what i showed my family last night and none of them could understand a word i was saying.

It was in english i swear, just my unintentional rendition of it! :)

i gots a 2.5 hour drive to the neuro tomorrow (he is in another city at the state teaching hospital <Medical College of Georgia>) and i don't know if I'll have to stay over night or not. I find that out today.

Fortunatly my family, now that they have retracted their threat not to take me b/c the thought i was "too normal" to need to see the neuro (that is until they read my email).

Now that they are taking me (as i can not see well enough to drive that distance), maybe i'll get some answers. I sure hope so.

I'll quit rambling and post this thread out to dry. :) I feel so awkword after last night. and any feedback from the forum would be appreciated b/c i feel like a freak show looking for a place to be accepted for who i am.

thanks, bobcat :confused:

Hello, Bobcat and welcome to NeuroTalk :)

The sensation when tucking your head down could be L'Hermittes.
L'hermittes is not exclusive to MS.

You can read more about L'Hermittes if you click on this link ---
http://www.themcfox.com/multiple-scl...ittes-sign.htm

Last I knew you had to be weird to be here!

Good luck with your neuro appt. Let us know how it goes.

Hello and Welcome!!

I think being a bit off is a prerequisite to this board. ;) I wish I had an answer for you but I don't. At least your family understands that there IS a problem now, that should help while you and your docs figure out what's going on.

My writing got bad for a while, we just started calling it Shellinguistics. I like the hieroglyphics though...gonna have to use it some time.

Best of luck and take care.

I was thinking the same thing. :D

LOL, you fit right in. I know I'm a little weird, and according to my brother- he now has the MRIs to prove it. :D

Hope the appointment goes well and you get some answers.

Hiya Bobcat - love the name!

Trust me you fit right in! My MRI's to prove I'm a tad weird myself, not to mention the goofy day to day MS symptoms. ;)

Good luck with your appointment and let us know how it goes!

Of course you fit in..:Crazy 2: :trampoline::Head-Spin:..as we all do.

I hope you get some answers soon, Rachael...:hug:

first conclusive proof!!!! Yeah!
 

Ok yeah i would sound super weird now to anyone but ya'll :hug:


but i just got back from an intake chiropractic appointment and yeah it is definately NOT in my head (or maybe it is - MRI's will tell that one). :Ponder: :D

The chiropractor tested my spine gently AND (we really need a drumroll smiley)

EVERY MUSCLE FROM MY HEAD TO MY TOES has moderate to severe spasticity :holysheep: which means even the gentlest touch caused pain and reflextivity (which ironicly i don't have very good reflexes any more)... except to pain. when they tap my right knee it says HUH? :mfr_wha: and doesn't do anything.

I also have SEVERE clinically observable balance issues! And today was a "good day"!

Not that it is such a great thing b/c the spacitity/ballance issues it is really painful but it is a great thing in some ways b/c it means that I'm not making all this up! :Poke:

you can fake a lot of things, and be crazy about a lot of things but making every muscle group from your head to your toes reflexively spastic is NOT fake-able!

I just mentioned my appointment to my mom and she was like "don't be so happy about it!" can i get a shout out for all those who have heard that line? :Doh:

She just don't get it! :icon_rolleyes:

I'm glad that ya'll do and that I'm a part of this group! even when i writes in hieroglyphics! :Writting:


my mom was wanting it to be all in my head, I'm glad it isn't b/c it feels awesome to be validated.

we need a :Thats-Funneh: MRI smiley too! hee hee hee

ya'll truely go my speed around here and can understand and decode hieroglyphics (thank goodness for spell check -like i can really spell hyroglphics). :Tip-Hat:

Thanks for the warm welcome!

Sincerely,

Rachael :grouphug:

Why Augusta and not AtL for the neuro!
 

You made me LoL!!!! :icon_lol:

I like that! Expressivly creative. Yep! that about sums it up! Heeee hee!


I ended up with a neuro in Augusta b/c that is where the Ophtomologist in Milledgeville (where i was in college in 2003) and diagnosed with diploplia (doubble vision) to the tune of 15 prism diopters at the time. (he was not sure how to put that much prism into glasses so he sent me to an optho in Augusta that he consults with.

she did put me in glasses to the tune of 12 prism diopters which i remained in though my eyes got steadily worse till eye surgery in 2006.


The eye surgery (strabismus surgery specificly) corrected my vison to a point but not entirely (mainly reduced the damage to the muscles from the prisim). I still have severe (28 prism diopters worth of eye turn to this day).

9 months after major corrective strabismis (doubble vision) surgery my eyes had still not stabilized and at that time i was sent to an neuolgoist at MCG to be tested for Myasthenia Gravis.

I do not have myasthenia gravis but the sx that i was willing to talk about at the time sure sounded like it (i just with held a lot of info like about the muscle spascity b/c i though people would think i was crazy like my family seems too). so they put me on medicine for the Myasthenia for a year, with the ever increasing doseage.

I am still on that medicine b/c it seems to help with the spascity! and the ever loved :circlelove: cog fog (we need a foggy smiley too!)

Yeah i know that is one of the most hated things that virtually all of us have in common. :eek: but i have it too so i guess i really do fit in!

Any who that is how i ended up in Augusta. Thanks for askin'


I :heartthrob: the MS community!

Wanted to give a shout out to everyone out there that ya'll have been the most positive and uplifting bunch of people i have ever met!!!!

You understand me and don't think I'm too weird to hang out with and you don't judge me!

I don't want to have MS, but if I do, I'm glad to be a part of this club b/c I'm around people who are like me. Want to live full life and prove to the world that just b/c you have a "disability" doesn't mean you have to be "disabled!"

Thanks for everything!

:hug: Rachael

I was thinking we all arrive pretty freaked out ;)

Welcome Rachael

You can post here anytime. MS or no MS. You're posts are interesting, informative and entertaining too. I love how you make really small paragraphs. :hug:

As Snoopy said way back on page 1, L"Hermittes Sign is the sensation the chin to chest motion called. I hate that most of all. Thankfully it comes and goes.

Hoping yoiu get some concrete answers. You've been through alot with the double vision, geez louise. Keep us posted.

:hug: