My choice My life

[mo0427]

Hello everyone I have some heaviness on my heart. First I've partly decided that I don't want to take Rebif. At times I feel weak  minded. I can't handle these bruises on my skin. My balance hasn't gotten better and I don't know what to do. Is there anything that can be done? My life has changed and I don't know what to do. But I need my balance can anyone help? Plus my doc is speaking of gileniya but they say insurance doesn't want to pay for it.

[mo0427]

That's the way I feel. Before I had my first relapse I exercised all the time I stretched daily telling myself this would make it better. It partly strengthened me but my pain still remained. My sister before Christmas kept mentioning yoga which I denied. Then for a gift for Christmas this is what I received SMH!

As far as the Geleniya goes speaking to the rep she sent the doc info for a appeal. I was told if it was still denied then that's when they would go through other methods of funding. But I was told the med was 4000 a month which is a lot of money. Lol so we'll see where it goes.

[Sumanadevii]

First, I don't blame you for being upset with your sister.  Has she an idea how that cuts straight into your core.  It sends a message alright.  The message?  You can prevent the damage being done by MS with exercise.  Some will also place blame on the MSers diet.  The helpful hints make me want to puke.  

I said one night to a friend when you complain of knee pain I offer a heating pad, over the counter meds ...anything that might be of help.  The last thing I would do is tell her to watch her diet and begin some exercise program.  That belongs in the hands of her doctor.  Why then do people think it is their business to tell an MSer what is or is not good for us?

Beats me!

I am with Lulu, call your doctor's office tomorrow.  Let them fight it out with insurance.  If not, there is always another neuro that is willing to take a new patient that WILL advocate for you.

Keep your chin up and keep us posted.

Sumana

[Lulu54]

I hope you are resting right now - and then tomorrow I want you to pick up the phone, call the doctor's office, and let them know that your insurance is playing this game.  The doctor may be able to redo the paperwork to justify this change.  

OR at the very least have  the doctor's office get in touch with the Gilenya/Novartis folks and figure what the next step is.  They have ways to help patients get these drugs if insurance doesn't want to help out.



gentle hugs to you,
Lu

PS sorry you work with a bully.  If you are in a larger company you should be in touch with your human resources department.  You may need to file for some type of protection under the Americans with Disabilities Act. (ADA).

[mo0427]

Wow and thnx I just received a call from Gileniya my insurance denied my claim. I am tired but too busy crying. A coworker just used my ms against me cutting out my plans for buying myself a gift oh well. I'm seriously considering SSI. I won't be able to handle this. But I'm trying :(

[Jacksmom516]

I can completely understand where you are coming from. I have only been dx for bout three weeks but knew deep down that I had MS.  I too wish for my old self -  I look at pictures of trips I went on and places Ive been and know I can never do those things again.  It is hard to accept.  My mobility is severely affected and yes I am going to PT and hoping it makes a difference.  My friends try to include me but I know it is a hassle to have me dragging behind.  Like Starryeyes I get weird looks when I use a cane  - started using crutches cause then it looks like i hurt my leg!  LOL  - the looks I get from people for using a handicapped tag is crazy but I need it.  

I have not told anyone as of yet about my dx - I wanted one last Christmas and New Years as just me not me with MS but I know I am going to have to say something soon -  Not ready for it though - keep trying to find ways to say the words - Guess it is hard when you haven't really accepted it yourself yet.

Anyway hang in there We know what you are going thru as everyone here has been there or is there now!

Hugs
Tracy

[Starryeyes2]

That's why I have lost so many friends. I get the feeling that I'm too much of a hassle to go places. I don't drink hardly at all anymore bcuz of being dizzy, it would just make it worse.

If I take my cane I get totally stared at. It's not fun. I'm don't feel old enough to have a cane. And now, I haven't been able to work for several yrs bcuz of MS symptoms. So people think there is nothing wrong w me. I look normal??.

We just have to take it a day at a time. Some days are better than others. Every one of us here can identify with what your feeling. I feel trapped in my life and body. I want my old me back. It's funny-I don't remember her. The girl that used to ski, bowl, do kickboxing...it's not me anymore. I'm someone else, and it's ok for now.

Hugs to you girl!!!
Kristi

I know how you feel.

[Guitar_grrrl]

Oh, I hear you on the idea of wanting the world to see you not as a PwMS, but just YOU!  JJ's right about not being so hard on yourself.  So often we need to give up judging ourselves to just get out there and live.  And if it means using AT (cane, walker, AFOs, etc.), so be it.

Get some PT, have a heart-to-heart with your neuro on DMDs, and above all, be good to yourself!

Big hugs to you (((!)))

[COBOB]

Most of the DMDs prevent additional damage, but do not repair existing damage (Tysabri seems to improve symptoms in some cases.)  If you are taking Interferons or Copaxone, they may give your brain a chance to heal itself since they modify the immune system, and to my knowledge, they do nothing to repair damage.  In the case of Copaxone, my Neuro said it can take 9 months to provide and protective effect.  

Bob

[sllowe]

Hi Mo,

Must of been a tough decision :( So sorry.
Hope the doc is willing to fight for the change in meds. Can you ask him to fight it?

As for the walking and balance, I've never taken it, but Ampyra is available to MSers. Lu is on it, and may be willing to share her experience w/that.

Don't be so hard on yourself for the decision - your not giving up, or you'd not be here with us! We'll help pull you through this :)

[supermum_ms]

I  hear you Mo, sheesh we all do!

I still have days when i want to scream at the moon for what this blasted thing has taken from me and then i have many more days where i'm simply happy that i can still potter about and remember everyones name. Be you, always be you and those around you will feel their way from the way you live with this.

HUGS............JJ

PS sometimes no one is looking at you, its just how you feel thats making you think they are, so dont care if they do or they dont and it wont matter either way. :-)

[mo0427]

You made my eyes wet and made me smile. For once I felt as if you're in my mind. For me this is new and it's hard to accept esp. when I tell someone.I hear sorry you're going through that.or sorry  to hear that.Recently my girlfriend sent me a youtube video of a girl telling abt her diagnosis. Which caused me to cry. I understood her meaning which was to remind me of god. But it made me upset. I don't need to constantly be reminded. This disease is going nowhere. So don't stare at me, let me live my life, and pls look at me for me.

[Starryeyes2]

I'm sorry your having a hard time.
I understand about having balance problems. My first symptom was balance trouble and it's never gone away. I use a cane if I'm walking in the mall or any distance.

I'm on Copaxone since 2009 but it's never helped my balance. I've gone to physical therapy for 2 yrs. I think it helped somewhat. My problem is that I hate for people to stare at me wondering what is wrong. Many are there due to in injury to a foot or ankle.

I don't like people to constantly bring up my MS either. I just want to go on with my life as best I can. I try to leave the cane home as often as I dare. The truth is tho that I'm not like regular people.

I get angry a lot when I think about why did I get this. Its not fair.
Well people on this forum are very helpful. I am so glad I found it.

Take care!!
Kristi

[mo0427]

Thank you very much the best advise you could have given me was you. I don't use a wheel chair, my balance hasn't gotten bad enough for a walker. I just miss my old self.

[mo0427]

Thank you, I'm trying my best to accept. its just that everyday I wake up I'm not going to forget. I'm handling the best I know but I don't need to continuous be reminded by family and friends. I want to live my life

[Lulu54]

I hear you about the reminders, but the reality is we have MS and now we have to find a way to make peace with it and get on with living.  Perhaps you might have this conversation with your doctor and ask for a referral for some form of talk therapy to sort out your feelings.  It can help, and what do you have to lose?

As for the yoga, anything that helps us to slow down, focus and breathe deeply is a good thing.  I hope you find it to be something you like.

[mo0427]

Thank you, my sister purchased two yoga dvd for me which I became upset bcuz it was a grab bag gift. I just don't constantly want to be reminded of the ms. But I'll give it a try.

[Lulu54]

Hi mo,
Have you talked this over with your doctor ?  I'm thinking you have since you mention Gilenya as an option.  You are in a tough place if you are wrestling with yourself over your treatment decisions.

In addition to drug therapy, have you asked for a referral for physical therapy?  The therapist might be of use with the balance issues.  And don't overlook yoga and tai chi as great tools for helping the balance problems.

be well,
Lulu

[Wobbly]

sorry to hear your having such a rough time and wish I could give you some advise, do you have a wheelchair for help with your balance issues?  I have and use it when I'm having a bad time with walking, balance issues.  

I'm not on Meds as I'm PPMS or SPMS?  one say one and one says another.  

Hope things improve for you this new year, hope others can give some advise.

take care
wobbly