@ Rest Area 51, Newbies Lounge July 22 '12

[gomer]

Welcome to Rest Area 51's....
......................Newbies Lounge..
a special haven for our family of newbies Dx'd w/MS in recent days or years and old-timers that are newbies at heart, or just want to help. Just follow the green arrow to our Newbies Lounge.

Being a newbie can be as scary and lonely as being in limbo. I know because I was in that situation when I first got my formal MS Dx. Limbo Island was such a great source of information and support between a new eye doc opening my MS can-o-worms and decades delayed full MS work-up & Dx. When I got my formal MS dx, there was no place for the newly diagnosed to go after Limbo Island, I felt lost, alone and tossed into a sea of sharks.

Remember we are your MS family away from family. The BIG question answered means many more new questions and decisions. For those still working on, seeking a formal MS Dx, I highly recommend you check out MinivanMama's Limbo Island.

We really do get it,
........ we understand like no non-MSer ever could.

Take a well deserved break from your travels on the MSuper highway,pull into a nice cozy shady parking spot, Unwind in our (always perfect weather) Newbies Lounge, pitch a tent or just lay out a blanket and enjoy the crisp cool fresh air . Help yourself to fresh Cider and donuts. The camp 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.

Remember this is YOUR lounge , so enjoy it, hey doc's have their own lounge and this one is OURS! (We have better fresher coffee anyway...ha ha.)

PLEASE.... Let US know how YOU, a member of our MS newbies family is doing.

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?

....Any Dr. apts. tests etc.

Hope you like our new name...to go with our new forum location at MS world.

Gomer Sir Falls--Lot

[MidwifeJeri]

HI all! You all can see my intro in last week's thread...

uh. I HATE steroids. Seriously can not WAIT to get off these suckers. I posted on my facebook account this status:

steroids=waking up at 3am, hot and sweaty, WIDE awake and wanting to sew or knit, craving nachos and having "King of the Road" firmly stuck in your head

Anyone relate?

Right now I am in the "I feel better so I can get up and walk without my horrible walker---no I can't my legs are all jello" phase.

hrmmm I really need to get up and around again. I am running out of time and I HATE staying in bed!

[momof8]

Jeri

I replied to you in the old thread, but now I see that you knit too??? Good heavens, girlfriend.....we are kindred spirits!

I hope you are feeling better and out of bed SOON!

[momof8]

I'm here!

Feeling good this week. Had infusion #2 on Tuesday and *waaaaay* overdid it on Wednesday which resulted in me basically being a drooling puddle by the end of the day.

I went into my calendar and for the next 4 infusions (which are already scheduled), I blacked out the day after to remind myself not to schedule appointments and just take it easy so that I don't do this to myself again.

I've been working out regularly. I'm SO excited to have found something I enjoy. Really want to be in better shape and lose a few pounds. I'm a bit paranoid about staying in at the weight/shape I am and having my MS progress to a point where it would be a lot more difficult to try to exercise, so I'm motivated to be working on it now.

I am toying with the idea of doing a 5K in September, but it feels scary to commit! I'm curious how others stay active and what you enjoy doing? Maybe it will give me some ideas!

[journeyman]

Me too...

When I was in the military I was a Medic and would get assigned to night shift for three months. After reading so many books I finally got sick or that. I never had any patients except once. I walked past our glass door and got all excited that I finally could see a patient to treat coming up the walk way. I got all the paper work and went behind the desk and put on my proffessional mask. It was then that I realized that I had seen my own reflection in the glass.

I told my wife I was going crazy. She introduced me to crocheting. I did a granny afghan and a bedspread. Then she introduced me to something called Bargello. Its like crostiching except you work vertically. I did a pillow and it was so neat. I am doing another one now.

My Psychiatrist says I am grandiose and moving too fast and annoying the heck out of everybody around me so she altered my medication regimen. I am now down from the penthous to the 10th floor. My wife says I am still too happy and talkative as you can tell by my writing. I am hoping to get my pillow done and the garden in before I get to the 5th floor and also I am in my fifth month of my remission. I only get six months if all goes normal. So I am expecting my relapse in the next two weeks.

This morning I couldn't remember how to spell my wife's name. So the road signs are up. Hope you get off the steroids soon. To bad they don't do for you what they do for the athletes.

Have a better or great week. Thanks for your comments.

Dave,
Tampa, Florida.
Weather: GOMER I was right. The weather monitor was sitting too close to the out flow from the a/c. I moved it out into the other end of the pool deck and the humidity went from 58 to 92. So prepare yourself for your visit in the sweat lodge know as Tampa.

[Briteyes90]

Hi everyone!

My name is Marie. I am a 30 year old mother of 4 and I was diagnosed with MS on Thursday. I have had numbness throughout the years effecting various parts of my body, but that was always attributed to the back problems I have had since I was a child.

In November of 2011 I severely sprained my right ankle rock climbing and then in February of this year my left leg decided to pretty much stop working. I could barely lift that foot off the ground. At that point I knew something was wrong, but had to wait for my insurance to kick in in April.

I was not able to get into see a doctor until June and then she set up all the tests to be done. I was able to get in and see a neurologist before October thank goodness (that is when they had my actual appointment set up, but thanks to a cancellation I was able to get in Thursday) and that's when I found out I do in fact have MS.

My neuro wants to start me on Tysabri depending on what my bloodwork says. Has anyone had any experience with this drug?

Sorry for the long post. I look forward to getting to know everyone and their stories.

[gomer]

Sorry J-man Dave...... but you made me think w/ur post
You were your own worst patient...........Ha Ha!


Had my (wasted) double header at the VA last thru. Renal clinic was not so bad but urology was as basically a repeat. VA healthcare standards in many aspects are substandard. MS care has been one exception & alright. No surprise to me, had same problems with urology decades ago. On the plus side it seems the kidney decline has stabilized, at least for now.

Then on the way home my brakes failed as went to take my exit ram to another freeway. I used the uphill of the ramp to slow and stop, added brake fluid and very slow and careful made it to the local kia dealer (i get some of my car work done there anyway) and was able to get it repaired. Not a good day, and washed out the next as well.

Side note here is my latest non-VA urologist ( I liked him) had moved practice and I have not been able to locate an address or phone##.

Gomer Sir Falls-a-lot

[MidwifeJeri]

I get to leave the house!!!

SOOOO exciting to get to leave the house because I go to my neurologist appointment today! I am getting dressed in "real" clothes for the first time in two weeks!

I think in my pre-MS days I would have been MORTIFIED to have to go anywhere in a wheelchair. Well, allow me to say that one week in the hospital and one week in my bedroom has killed off the part of me that cared about that.

Bring in on! I will let you all know how it goes...

[journeyman]

I always knew your were smart!

I am so glad that you used your skills to get the car under contol. That could have been really bad if you had hit someone. For you and them. It's as if you don't have enough going on already.

Well my mental elevator has gone from the penthouse to the fifth floor with my medication changes. I don't like being non-manic. My shrink keeps telling me that this is where everybody else lives and calls normal life. I still like manic better.

Then she relates that a manic patient of her's got so high that he stood naked and throwing hundred dollar bills at passing cars on a major highway. I didn't see HIM!!! Guess I don't want to go THERE but I was getting so much done around the house and garden. Now I feel like a slug on a hot side walk.

I thank God that you are OK. We need you and your wisdom here.

I wish everybody here a great day or at least a less painful one. God Speed.

Dave, Tampa, Florida
"Journeyman"

[PeacheyPie]

Hi Everyone, I'm Peachey and I'm 28 year old doggy(1) and kitty(3) mom (no kids yet). My Neuro said he's 99% sure I have MS, does that count as a definite dx? I still have my lumbar puncture on Wednesday.

I've had optic neuritis twice now (the first time the docs didn't know what it was, but we know now!) and recently my arms and mid back have been going numb.

I had my first dose of solu medrol treatments last week. I had 5 doses over 5 days, administered by myself at home (nurses came and put and IV in and told me how to do it). I had a horrible reaction after my last dose where my heart rate went down to 48. My Neuro sent me to the ER where it went down even further to 42, so they gave me atropine which made it go SUPER fast in a really short time. I was told I almost died. Another side effect I noticed is that my muscles feel a lot more gigglier and my breasts look different (sorry if TMI).

I'm enjoying reading everyone's stories, and I see there are a couple knitters in this thread. I knit too I'm currently working on a shrug to wear to my brother's wedding!

[thewildrose]

Hi All!

Glad to see the copaxone team is standing strong

Welcome Jeri - and I can relate to the 'YIPEE, I'm leaving the house' feeling - even if it's only to a Dr or test. Hope you can get back on track soon!

Nice to meet you Briteyes and Peachey!

Glad to see we have creative outlets I crochet, but am trying to teach myself to knit and to sew. I can knit simple hats and scarves pretty well, but never have really tried to follow a pattern yet. I just started posting some of my photos in the Creative Center though - I LOVE that site

Scheduled for my first copaxone injection with the nurse on Wednesday afternoon. Wish dh could be here so I don't forget anything she tells me, but he is going to have to keep the Shepherds busy.

Hope everyone has a good week!

[thewildrose]

Oh - one more thing

Did all of you knitters and crocheters know about Ravelry? Check it out - there's a community where you can share your projects and find patterns and materials I'm GroovyThreads

[PeacheyPie]

Glad to see the copaxone team is standing strong

Welcome Jeri - and I can relate to the 'YIPEE, I'm leaving the house' feeling - even if it's only to a Dr or test. Hope you can get back on track soon!

Nice to meet you Briteyes and Peachey!

Glad to see we have creative outlets I crochet, but am trying to teach myself to knit and to sew. I can knit simple hats and scarves pretty well, but never have really tried to follow a pattern yet. I just started posting some of my photos in the Creative Center though - I LOVE that site

Scheduled for my first copaxone injection with the nurse on Wednesday afternoon. Wish dh could be here so I don't forget anything she tells me, but he is going to have to keep the Shepherds busy.

Hope everyone has a good week!

I see you're in PA, I am as well. May I ask where? I live in Lancaster County.

[thewildrose]

HI Peachey!!!

I live a stone's throw from the Lancaster County Line in Conewago twp, Dauphin Co - GREAT to meet you

[PeacheyPie]

Awesome! I just googled your place, and I had my MRI at Norlanco in Etown, not too far from yoU!