Newbie- What are you working with?

[Growing2Boys]

HI  EVERYONE,
I AM NEW DX. SYMPTOMS FOR 10 YEARS, BUT NOW SEVERE. I'M FEELING A BIT SORRY FOR MYSELF & I WAS HOPING TO GET SOME UPLIFTING STORIES OF STRENGTH. I HAVE TO HEAD BACK TO WORK THIS WEEKEND I HAVE BEEN OFF FOR A MONTH GETTING OVER A RELAPSE- I WORK 14 HOUR SHIFTS ON SAT/SUN.
I HAVE 2 SMALL CHILDREN & THAT SCHEDULE ALLOWS ME TO BE HOME WITH THEM DURING THE WEEK.

QUITTING WORK ISN'T AN OPTION FOR ME AT THE MOMENT, BUT I AM FACING TRYING TO WORK WITH  BLADDER DISFUNCTION, NUMBNESS, WEAKNESS, FATIGUE, SHOOTING ELECTRICAL TYPE PAINS, A TREMOR & JERKING OF MY EXTREMITIES.  I REALLY WANT TO TOUGH IT OUT & WORK . I AM OFTEN ON MY FEET ALL DAY AT WORK. I DO HEAVY LIFTING. I AM A NURSE. NO OTHER JOBS ARE OPEN HERE AT THE MOMENT.
I HAVE STARTED COPAXONE THIS WEEK.

ANYONE ELSE WORKING THROUGH THE PAIN & FATIGUE? HOW ARE YOU STAYING STRONG? ANY TIPS ON MAKING IT THROUGH THE DAY?

[Lulu54]

G2B, you will now go on and provide inspiration to others - that is how it works! :-)

I haven't done provigil, but I am on baclofen.  Please do not be afraid to try this drug. You need to titrate the dose and you can't stop it suddenly but it does offer all sorts of benefits.  I take 40-60mg a day, which is a pretty medium dose.  I started on it because I lacked stamina - for example, when I was in the kitchen all I wanted to do was go sit down.  

My neuro explained that the exhaustion was coming for the mixed up signals in nerves . The baclofen quiets that down.  Yes, if you take too much you may have muscle control problems, and that is why you titrate the dose until you find what works for you.  So please give it a try.  If it doesn't work for you there is always the option to stop (again titrating down!).

As for the internet - yes, it is a blessing to have all this at our fingertips.  We just have to use it wisely.  Not everything we read out there is true, or backed by scientific facts.

Stay in touch, Lulu

[Growing2Boys]

Ahhh, thank you all so very much. Isn't it funny that a few kind words from strangers can make you feel less isolated? I can use  you all as my inspiration now!
My neurologist has offered Provigil. I am going to try it tomorrow for a trail run before I use it at work. He also gave me a prescription for Baclofen, but I am afraid of it after reading all the bad effects. I'm afraid it will make me too weak to stand & then apparently you can't just stop it abruptly?

The advice on the gyno-urologist is wonderful- thank you. I will be honest I have never heard of that specialty (blushing because I am a nurse) I will search for one immediatey tomorrow morning. I seem to be retaining a great deal of urine & it's painful.

I think the worse part of this has been the lack of information & support. My neurologist just told me I have MS & I needed to start injections immediately. BOOM!
No other information or advice was offered.
What did people do before the internet?

Thank you all again. I'm glad I have found this site.
Sarah

[sllowe]

You've come to the right spot!!!!!

So glad you chose us to share your thoughts with -- we'll be more than happy to carry your burdens right alongside you!

All you can do is take every minute at a time and keep thinking about the rest of the week w/your kids. Keep drudging through best you can.

Are you on any meds for bladder help and fatigue?

Happy to have you with us. Hope you get back w/us soon!
-Shell

[Wobbly]

Welcome to the forum, sorry to hear your having a difficult time... we all seem to go through time that can really drag you down.  I got Dx last summer and it took over 4 years but when I got the Dx, it took me quite awhile to accept this.. now I'm learning to use a Powerchair, so I can get out of the house more.  

it takes awhile to accept that your life is not going to be the same, but change will happen and we can do it..
your not alone and if you need to chat...we are here for each other.
take care dear
wobbly

[Lulu54]

Hi G2B - welcome to the forum here.  There are lots of stories here and I hope you will find more than one that gives you glimpses of hope and what living with this MiSerable disease can be like when you are not in a relapse.  

It is too bad that taking more time off work is not an option.  But we all can understand the need to keep a job for pay and for benefits.  Its a tough spot to be in and I hope your body allows you to ease back into the routine.

Have you been treated with steroids during this relapse?  It usually takes several months on copaxone until you begin to notice a big difference.  Hang in there with the copax, it is definitely worth the daily jabs.

I work full time, five days a week, and there are many days I just want to be home.  Unfortunately that's not an option for me, either.  Fortunately I am at a desk all day, and not on my feet.  I'm not sure I could muster the stamine to do that.

I know you are active with the children and your work, but you may want to focus on finding a type of exercise you can do regularly.  Exercise really is good for quieting the exhaustion most of the time.  

There are a bunch of us here with bladder disfunction.  There are treatments that can help, so please find a urogynecologist to see.  We like the combo specialty doctor for women so all the parts can be worked on by one doc.  There are drugs and techniques that can help - I use intermittent self-catherization several times a day to help with the bladder.  A good uro consult will help you to understand what problem you have.  

I wish I had some substantive tips to offer you - I am sure others here will jump in and have ideas.  Welcome again!

be well,
Lulu