Welcome to our Newbies Lounge June 20/2012

[gomer]

Welcome to Newbies Lounge..at Rest Area 51, 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.

Being a newbie can be as scary and lonely as being in limbo, 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 get it, we understand like no non-MS'r 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.

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. Seems more descriptive to go with our new forum / section at MS world.
I think Newbies Lounge sounds better than Newly Diagnosed, What do you think?

Gomer Sir Falls--Lot

[lindajot]

Good to kick back here!

In a place where no one can possibly understand, or where you just plain don't say what you're dealing with today, cause "they" might nod and turn away anyhow . . . I thank you for having a place to lay back and share the moment!

Today was a day of bad eyes and heavy legs. All got done that I'd planned and that is a great day

I hope you, Gomer, and all others had a good day as well!

[MtnHigh]

Well after having 6 weeks of a flare up, worse one I have ever had so far... I have had 3 good days.. I did to much yesterday.. folded 9 loads of laundry and did 3 more, but I have 4 kids and a hubby.. I was sooooo behind!!!

I am hoping that Thursday to Saturday is good too. As we have to travel a crossed state to get our 4 year old to a Children's hospital for a recheck on a major surgery he had in Feb of this year. 5 hours to 6 hours in the car isn't sounding good. We will have to take some stops coming home on Saturday, but going Thursday we are going simi fast, because we are not leaving home until noon.

I still can't seem to get into the Neo doc until the end of Aug.. but not to worried about it now that my flare up is gone.

Hope everyone has a great weekend!!!

[minivanmama]

Hi Gomer

Yes we are neighbors. That is good it makes it easier to island hop.

Hope you are doing good.

Lot of (((hugs)))

[aosinternet]

Diagnosed 6/19 have DMD questions

On third day of IV steroids....which have helped alot

Now the tough part picking out meds...think I have it narrowed down to copaxone, rebif or tysbari. Neuro is suggesting Tsybari ...but that one freaks me out. Waiting on jc virus results....

Thinking trying copax...and if that doesn't work try rebif and then Tysbari as last option

Or go rebif to start.

Thoughts?

[HuntOP]

Your reest area is such a positive place! As a 12yr "veteran" i just have to smile everytime i peek in here! Gomer and journeyman, you two deserve a huge pat on the back and a very heartfelt thank you for a job so well done!
Thank you both!
HuntOP/hunterd

[gomer]

aosinternet....welcome!

There is no right or wrong choice that I know of for a first CRAB/DMD.

You are doing the best first thing, study the options and pick what you are most comfortable with, along with your Dr.

I chose Copaxone, and here is my personal logic;

-1- Side effects, Copax seems to have milder ones

-2- I already was on Multiple Daily Injections of insulins for my diabetes. Insulin and Copax are both SC type injections, so nuttin new there. My D-routine already called for 5 insulin shots a day, so it was just another/ one more jab in my human pin cushion.

There was a time I was on B-12 injections. I did them IM (into muscle) as ordered, but not a big fan of IM injections.

There are other factors that you may want to consider.

Gomer Sir Falls-a-lot

[J9orange]

It's nice to be able to ask questions or jsut post how you are feeling in a safe place.

After much reading it seems that Copax is the med that I will be starting on. I have given myself shots before when I was on fertility meds but from what I'm reading these shots will be different. Will somebody show me how to do them or do they just send me the meds and I'm on my own? I'm so confused!!

My Neuro also mentioned meds for muscle pains in legs and spasticity. He said we would talk about them at my next appt in 2 weeks. He said that some of them can cause muscle weakness or diabetes. Has anybody taken any meds for muscle aches / spasticity? What have you taken and did it help? Any side affects?

Thanks again fro all the help.

[thewildrose]

Dx today

Hello all - nice to meet you .. I was just dx today and given a week to consider medication. Can I ask you all a few questions? I think I want copaxone - I'm a natural girl and usually use herbs for medicine, so the one with the least warnings is the one for me.

My questions are:
Is anyone out there using copaxone and have gone into a remission, or still having symptoms daily?

and - um - I drink alcohol (we live on a homestead and make our own beer - all natural, of course anyone know if this would be a no-no on copaxone? um- MJ?

Thank you and I'm happy to find another supportive break on this wild ride

[Kraheera]

I'm a Copax user myself. For those who are going to be starting it, the first step is to relax.

When you tell your Doc you are going to start Copax, he sends in paperwork. They will contact you, and you will arrange the times for the meds to be dropped off. They will send a nurse out to train you and anyone you want in how to inject properly. Cleaning procedures, etc.


As for me...

My legs hurt. Today I felt like I got smacked by a semi-truck. I think I overdid it, honestly. I felt awake, and then I did some errands around town. By the time I was driving home, I felt like I was going to pass out. Made it inside, packed the kids into a nap... and then laid down to close my eyes. I feel a little better, but maybe it's also the heat? WE hit 90 today, at least.

And did I mention my legs HURT?

[woodstock]

Tuesday, June 26 will be the one year anniversary of my introduction to the world of MS. My initial sx was slight numbness on one side of my face, hand, leg and foot that actually went away on its own two days after dx, one week after they started. From what I can tell, I primarily have cognitive symptoms thus far.

March 31, I finally started on Copaxone after spending four months going back and forth with the neuro's office and the insurance company on getting the prescription going.

I'm 49 and chose Copaxone due to the fewer side effects. I work full time and just couldn't see myself adjusting to having flu like symptoms all the time. Thewildrose, I don't drink that often, but since starting Copaxone, I've noticed that it seems that I feel the alcohol much more quickly if I drink. My old limit used to be 2-3 mixed drinks a few times a year; I'm now at 1.

Next month, I will have my third brain MRI of the year to see how it's going since the start of Copaxone. I have around 4 hrs of neuropsych testing scheduled for July 13 and my next neuro appt scheduled for July 18. Waiting impatiently to see the results.

[J9orange]

Thanks for all the advice on Copax. I plan on going back to work in Sept. I've been out since January and I want to get my life back including teaching full time again. My symptoms are mainly cognitive, leg pain and the hug. I would like to be able to get meds coordinated this summer so by Sept I have some relief. The past 2 days have been horrible with this 98 degree weather. I live outside Philadelphia and I'm so glad the rain finally came. Hoping it brings cooler weather.

[thewildrose]

Copax

I think I definitely will be trying the copaxone - thank you for the advice

J9Orange - I too am near Phila and the last two days have been horrendous - hopefully today will be a little kinder, but the humidity is still looking rough

I've been out of work since April - cognitive, balance, tremors, HUG - three month trial of a med and hopefully can get back, but don't know to what - they've already given my job away.

Good luck to you

[woodstock]

Has anyone else here seen a neuropsychologist for an evaluation? I met with the neuropsych at the beginning of this month and am going for the testing next month. From what I understand this will help to see where I am now and establish a baseline for the future in the event that I need to apply for disability retirement.

Like a couple of you, I work in the schools as a counselor. So far, I haven't had symptoms significant enough to miss much work. But, my primary concern has been with cognitive symptoms...loss of memory, no organizational skills, not being able to concentrate, not being able to process things and becoming easily overwhelmed, etc... I find myself often staying late after school (like until 5 or 6 pm when I should leave at 3 or 4:15 depending on the day) just to stay reasonably on top of things.

I work 12 months, so now that things have finally slowed down for the summer, I am using this time to go through my office at work, purge like crazy and hopefully be organized enough in the next month that my life during the regular school year will be much better.

[J9orange]

I hope I have names right so that my reply does not coem out wrong. But then again, we are all having the same issues so I know you will understand... .

The wild Rose ... I'm so grateful the humidity is better today. Yesterday I had to go out early bc my girls are in camp and it was the Meet and Greet with the counselors. It was alrady so hot and sticky at 8:15, ugh. So happy today was cooler. I'm so sorry they gave your position away, hopefully whattever new position you get will be one that works better iwth your MS.

Woodstock... That is my fear as well, how long can I continue to function in my job. Education is a cognitive job..!! I teach Spec Educ, if I'm having trouble readign adn concentrating then how can I do my job?? I've been out since January but I've also had not meds at all except a few times on steroids. So hopefully with the Copaxone and some other meds, vitamins and a change in diet I can get my head working better. I can handle the leg pain at work, but not problems with my concentration and cognitive stuff.

I hope everyone is having a good weekend.