@ Rest Area 51 Paging ALL MS Newbies Nov 27 '11

[gomer]

Welcome to Rest Area 51... a special haven or your New MS family for newbies Dx'd w/MS in recent days or years and newbies at .

Pull into a nice cozy shady parking spot Pitch a tent or just lay out a blanket and enjoy the crisp cool fresh air .
Help yourself to fresh Cider and donuts. The fire is roaring in the open pit ready for hot dogs, marshmallows and smore's Feel free to share your ideas, experiences and support to your fellow newbies. Relax, you are among friends, friends that understand. We have a virtual soap box, feel free to vent anytime.

Being a newbie can be as scary and lonely as being in limbo, Remember we are you family away from family. The BIG question answered means many more new questions and decisions.

PLEASE.... Take a break from the MSuper hwy and let us know how YOU, a member of our MS newbies family is doing.

A y WELCOME to our newbies......


Have a QUESTION? Please don't be shy........
The only dumb stupid question........is the one NOT asked.

?How was your Week? ........
...Good I hope, Any Dr. apts tests etc?

? What does the new week have in store for you?
....Any Dr. appts. tests etc.


Gomer Gobble Gobble

[seeuinct]

Hi all newbies~
I have an MRI on Wednesday this week to check on my brain and my meningioma (benign tumor on brain). A little nervous about it but I have some meds to help me through. Also waiting for the Avonex nurse to call and set up my training. It's getting close to Christmas and things start to get busy...kinda of worried about how much it's going to knock me off my feet.
I bought my tree today and am going to decorate before the meds. Hope everyone is well and had a happy Thanksgiving.

[BigA]

seeuinct, good luck with that. You've got a lot on your mind (ouch, sorry) but your good attitude will help you.

I just wanted to post this for new people who like us all were, are probably wondering. This is an excellent chart about how to tell and what to do. I think it's excellent.
https://www.virginiamason.org/workfi...acerbation.pdf


This is a podcast where doctors discuss the differences between an exacerbation and a pseudo-exacerbation.

http://www.everydayhealth.com/multip...nscript-1.aspx

I highly recommend this book for all people just starting out
http://www.amazon.com/Overcoming-Mul...4168729&sr=8-1

[BeneathTheLies]

I've been glued to my new kindle and already read a really good MS related book. I definitely overdid it this weekend. Now I'm barely able to walk and instead of the usual tension it feels like charlies horses in my legs. It was worth it though, I can finally say I'm completely unpacked and moved in. Only took me 6 months. lol. I hope everyone had a wonderful Thanksgiving.

[Kraheera]

I should just live in my bathroom, I ALWAYS have to pee!

[Ryluria]

I'm doing good, but my friend told me that her leg was numb and asked me if it could be MS. I said it could be, but could be other things too. They sent her to a neurologist and he scheduled MRIs for her today.

Then last night she texted me and said that she couldn't see out of her right eye. I told her to call the neuro asap. I feel so bad.... and I feel like I've got her all worked up and scared, but I couldn't just not say anything!

[journeyman]

Ryluria What a good friend you are.

Ryluria I was working in an ER when my eye went out. They admitted me right away. I went through multiple neuros Docs and even an Nero-Opthamologist. None of them did any medical treatment.

Now the Doc's ask me if they put me on the IV. I tell them no. Then they told me if I have been put on the IV they could have saved my eye. Now I am permanently blind in one eye.

Whether you created a state of fear or not you may have saved the sight in the eye. Sometimes fear is the tool of choice.

Thank you for being there for your friend and the advice was accurate and caring.
Dave
J: Tampa, FL

[Ryluria]

Thank you Journeyman. I told her that she will probably need IV steroids. She was worried that it could happen to both eyes. I told her I don't think so but I'm not sure. Does that ever happen?

I'm glad that I did get the IV steroids because my eyesight is almost exactly as it was before the ON. I can't even tell the difference anymore when I cover the other eye.

[jenphilly]

new neuro search

Hi all,

Haven't been online much since signing up, our laptop is having power issues (kinda know that feeling!!).... it will startup but barely get started booting up and just turn off (yeah, really know that feeling!!).

I have been pulling my hair out with searching for a new neurologist who can see me in the vaguely near future. Starting to think I need to reconsider and go with just a solid neurologist instead of someone who is known to 'specialize' in MS.

Speaking of eye issues, I've been having eye problems, so made an appointment with an ophthmalogist, but not til Monday.

Cutting out gluten, realized over Thanksgiving that gluten really does kick my butt big time... and having a drink is really really a bad choice! Not that I drink much, but made pumpkin martinis over the weekend and paid a price for that!

Stole my daughter's laptop, so hopefully will be more involved and get to know everyone more!

Thanks and hope everyone had a great holiday!!

Jen

[gomer]

J.man?......... Why did you not tell me you lost sight in one eye? Here I thought we were friends, now if find U R a 1-eye monster...............lol I never noticed even a hint you had any visual issues at all. Heck you even drive faster than I do.


jenphilly.. glad to have you here, WELCOME!
Good luck on your neuro search, good docs of any flavor, not just neuros are hard to find.

Ryluria... We need to post a hero plaque on our Bboard. You may have saved your friend from a more serious fate. You are a TRUE FRIEND indeed.

BTL........ happy reading, when can we expect your finished book report?

Kraheera... How about have a cable run in there so you can watch TV or surf the web from the thrown room........

Gomer Can't C U, but I am not in Connecticut either

[BigA]

Then they told me if I have been put on the IV they could have saved my eye. Now I am permanently blind in one eye.
J: Tampa, FL

Dave. Thanks for sharing your experience. Are you really sure that's the case? I understood from a Neuro who specializes in ON that the proof that Steroids don't change long-term outcomes was in fact, based on use with ON. You might be carrying around an unnecessary burden.

Also, if it is the case, did they explain carefully to you at the time? Did they let you know the consequences of not taking the Steroids?

And I am curious why you turned them down. Granted, I didn't like them and they did me no good, except to send me to the emergency room with exceedingly high blood sugar and many people don't like to take drugs... but I am curious, if it's OK.

BigA

[Kraheera]

That sounds great Gomer. If only I actually owned this house! GAH! Stupid toilet! I should get a cushion seat at this rate!

[Ryluria]

Thanks gomer


They told her yesterday that it isn't MS... she's diabetic! I'm glad that she doesn't have MS but diabetes stinks too

[gomer]

Ryluria.......... They both stink, MS & diabetes that is. I otta know.......Lucky me, I have BOTH diabetes and MS. I am a human pin-cushion, rx'd 5 insulin shots a day plus a copaxone stick for the MS. (my wife was trained to help with the insulin shots, so when I started copaxone she got trained on that as well)

I hope your friend is getting good care now for her diabetes.

Gomer

[journeyman]

J here.

I was working in an ER lockup. I only know Psych stuff. I only remember MS from my text book in college. You have a tendency to forget all the other fields when you have worked in one. I was only working there so they couldn't identify me. I just fit right in.

I was working in the ER and had noticed I couldn't see that morning. I was waiting for a Doc to sign a chart and while I was waiting I was reading a poster on the symptoms of stroke. When I saw they part about the eye I I began to panic. I asked a doc about it. He checked it and I had delay in the pupil opening and closing with the light stimulation.

I was hospitalized. B/P dropped to 80/50 and my pulse dropped to 38. Now they began to panic.

The next AM I was examined by a neuro-ophthalmologist who told me my optic disc was constricted. (that was it). I was released after five days. I knew nothing or very little about MS or the IV treatment. I didn't refuse it.

A month later I was told I was pretty much blind in the eye by a neuro ophthmologist. She did a field test on my eyes and I had some peripherial vision. She referred my to a plastic surgeon for an eye lift. (I sure wasn't going to refuse that.)

You'll love this!!! My wife was away for a conference and I went to trim my hair and nicked it. So I decided to shave my head. I wanted to see what it looked like. The next day I went for my eyelid lift. The next I got the raccoon eyes. So when my wife came home there I was with the raccoon eyes and bald head. My wife nearly passed out in the driveway.

The eyelid lift greatly enhanced my peripheral vision. Every Neuro-Ophthalmologist I have gone to since then has asked me why I didn't get the IV "It could have saved your sight." So what do I know. Nobody recommended the IV and I didn't know about it. So I am with out much sight in my right eye.

GOMERI didn't tell you because I forget that I have it. A compensation thing.

J: