It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 11-18-2009, 05:38 PM   #1
Junior Member
(female)
 
Join Date: Apr 2009
Posts: 27
bhmomof2 HB User
thanks

Just wanted to give a shout out to MSnik and MSjayhawk. Over the last few monsth you have been supportive and answered many questions. On your advice I finally went to a MS specialist today and received a diagnosis of MS. I will be starting on Rebif in the next few weeks, after insurance paperwork and a visit from a home health nurse.
Although I am overwhelmed right now, I know I have a place to go for support and advice.
Thanks for all you do for the many of us out there.

 
Old 11-18-2009, 07:28 PM   #2
Junior Member
(male)
 
Join Date: Sep 2009
Posts: 28
mrknuckle HB User
Re: thanks

I agree,they are great to have around.
__________________
MS DX in 2010

I don't know much,but I am learnin

 
Sponsors Lightbulb
   
Old 11-18-2009, 08:15 PM   #3
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,116
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: thanks

Welcome back. Sorry to hear of your diagnosis, but welcome to the MS Family. Stick close and avoid the pity-party invites.

In a short time you can obtain your new normalcy. Yes, it can be overwhelming, but you can ease your transition a bit with self-learning. Take the time to learn your triggers and make sure you allow yourself some self-pampering on the bad days. Remember- baby steps. You might have setbacks, but you can overcome them. Do not browbeat yourself on days when you just cannot handle things. Those are times for self-pampering- not for blaming yourself.

Life is all too brief to worry. Count your daily blessings and you will soon learn how many blessings you really have. In the meanwhile, you are still in my prayers.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 11-18-2009, 08:31 PM   #4
Member
(female)
 
Join Date: Jun 2009
Location: San Diego
Posts: 52
Positivethinkin HB User
Re: thanks

I want to Thank you guys as well. I appreciate everything I read on this healthboard. MSNIK and MS Jayhawk you guys are helping a lot of people have a better life with MS. I think everybody else on this board does well also. Thank you to everbody that participates on the board. I wish all of you the best.

Postivethinkin-Brenda

 
Old 11-19-2009, 04:36 AM   #5
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,531
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: thanks

awww. Arent you guys sweet? Just doing for you'all, what was done for me not so many years ago. But youre welcome.

BHmomof2....well, its a diagnosis, right? Not the greatest news in the world, but certainly far from the worst! Im also on Rebif, and TONS of helpful hints to get you thru the first 6 months (which, trust me, arent easy); however I love Rebif, and what it is supposed to do, it HAS done for me. Youre going to be fine on it, and Ill be here every step of the way if you have questions or need help! All you have to do is shout out! I just that Rebif is the most utilized of any MS drug this year, and the statistics are still the highest for slowing down progression and reducing symtoms- I think you are in good hands with your doctor and with this drug...

So, welcome to the MS family (officially) and looking forward to helping you and hearing about, your journey!

Nikki
__________________
RRMS- dx 05

 
Old 11-19-2009, 04:53 AM   #6
Junior Member
(female)
 
Join Date: Apr 2009
Posts: 27
bhmomof2 HB User
Re: thanks

I do have a question I need clearing up. Yesterday I heard so much info and met so many people (drs, social worker, etc.). I am not sure I understood something.
The rebif will not make me feel better but it will prevent the disease from progressing? So will I always feel like this? They have me on provigil, lyrica and vitamin D. I think those are for treating my symptoms but not sure if the rebif helps too??
Sorry it is just a bit confusing and the stack of phamplets are just too overwhelming to dive into right now.

 
Old 11-19-2009, 06:02 AM   #7
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,116
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: thanks

Meds are used to treat symptoms. If you have RRMS, you will cycle through to feeling good. If you are progressive, you will deal with issues daily. If you are in the midst of an exacerbation, you will get to feeling normal, but the length of time depends on your uniqueness.

Be the "squeaky wheel" and ask the questions for which you need answers. Most doctors will appreciate the fact that you are interested and want to know more. When I have questions, I know that my neuro's nurse will return my call by the end of the day. My neuro has called me when there has been major problems, but she is busy and the answers I get from her nurse are from her.

The only meds to make "it" go away is a cure. When that day comes, I would gladly give you "free up's" in the queue .
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 11-19-2009, 03:34 PM   #8
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,531
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: thanks

Hi again! Sorry it took me so long to get back to you- long day at work. I can tell you that the first 6 months on Rebif, I didnt feel terrific. There were nights after the shot when I wanted to do anything but take another shot...then, all the sudden, about month 3- I started getting my energy back! Started to feel good actually....NO, Rebif wont cure your symtoms, but it does help to stabilize you..it is supposed to prevent progression and NEW symtoms from starting. Take it from me, I had over 50 lesions when diagnosed...not one new one in 4 years- its working! Your current symtoms may or may not dissappear- depends on whether or not the nerve damage is permanent...usually if it lasts more then two years, it wont fix itself. I have never regained use of my left hand or fingers- which was my onset symtom...

Also with Rebif, in the first 6 months, I had a bout of Optical Neuritis. Thought for sure, it wasnt working. I was positive my Neuro would take me off it....but he insisted that I give it 6 whole months, and honestly, Im glad he did. By month 5, the side effects stopped- and I never had a new symtom again. IT takes 6 full months for it to build up in your blood stream to theraputic levels, so no matter what- hang in there!!!!

I can honestly tell you it was the smartest decision I ever made....
Hugs,
Nikki
__________________
RRMS- dx 05

 
Old 11-19-2009, 05:42 PM   #9
Junior Member
(female)
 
Join Date: Apr 2009
Posts: 27
bhmomof2 HB User
Re: thanks

I will give it my all and not give up. They called today and are delivering the Rebif next Tuesday. I am going to wait until we get back from celebrating Thanksgiving to start.
Thanks again. Without you guys I would have never gone to the ms specialist and probably still be wondering what was wrong with me.

 
Old 11-19-2009, 05:50 PM   #10
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,531
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: thanks

hugs , hugs, and more hugs. Rebif is horrible to get used to. I have all sorts of helpful hints for you. First of all, and write this one down. Ask if there is any reason you cant take ALEVE, instead of Tylenol or Motrin. Im sure there isnt, but ask anyway. You take 1 Aleve, which works for 12 hours, instead of 2 Tylenol every 4 hours...and it really helps more then anything else as a pre-injection helper.......with Rebif side effects, I used to take one pill 1/2 hour before my shot, then if I felt really bad (and when you get to the 44 mcg dosage- full strength) you will for a few weeks- Id take a second Aleve, about 3 hours after the first...that managed to get me thru the night.

Just so you know, the side effects wont kick in until you hit week 4 of the drugs...you titrate, starting at a low dose and working up to fulldose....and they kick in about 1 hour post shot...and last about 8 hours. By the next day, youll be100% but exhuasted from feeling lousy all night. If you have ambien, or anything to help you sleep- use it! The side effects are desribed as flu like symtoms....nauseau, sweats, sometimes chills...its horrible. BUT I PROMISE IT DOESNT LAST LONG AND IT WILL BE WORTH IT!!! Hey, its only 3 days a week for a few months...you can do it! I did it and managed to get thru my first semsters of my MBA- my first months of being a stepmother and wife...trust me, youll survive!

Also, they will teach you to massage the area after you inject. Look into Arnica Gel...found in any health food store, or grocery aisle with natural foods, its all natural, has the slip of aloe gel and helps to keep bruising and redness to a minimum. I go thru a tube every other month. I use it with every injection and use it in between injections, when I get out of the shower- to keep brusing at bay...it really helps!!! I also prefer ice to heat, befor the shot, but thats an individual thing....you have to try them both to see which is better. Heat is my enemy!

More hints to come...but start there. Aleve and Arnica Gel...have a happy night. and PROUD OF YOU!!!! Ill be here for you!
Nikki
__________________
RRMS- dx 05

 
Old 11-19-2009, 06:48 PM   #11
Junior Member
(female)
 
Join Date: Apr 2009
Posts: 27
bhmomof2 HB User
Re: thanks

Thanks, through all this you make me smile. I am going to write these suggestions down. Right now I feel like I can't process a lot but want to be able to go back to them when I can.

This board is a godsend. I really don't have anyone else I can talk to like I talk here. I am keeping up the smile and great attitude for my family, so they don't worry. With two teenage girls, they want to know that this won't affect the life they are used to.

Hugs back to you.

 
Old 11-19-2009, 06:51 PM   #12
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,531
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: thanks

Continue to smile- ok? You, and your girls will survive this. Its going to take some getting used to, but a year from now, youll look back and be proud. The first year is always the hardest...its allot to absorb!

Someone helped me, from this board, my first few months with MS, and Im sticking around to help others....you really do get what you give in this world!

Take a few days off, but ask any questions that come to mind...and whatever you do, trust your doctors and nurses. Now is a good time to relax and let "it be". Because it really is- what it is, as the kids are saying around here! When you are ready for more info, Im here for ya.
Nikki
__________________
RRMS- dx 05

 
Old 11-20-2009, 10:50 AM   #13
Newbie
(female)
 
Join Date: Nov 2009
Location: Lansing Michigan
Posts: 3
AT123 HB User
Re: thanks

Hello,
Sorry to hear about you health problem..

Last edited by Administrator; 11-20-2009 at 10:11 PM. Reason: inappropriate details, and never post real names

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Heartfelt Thanks mex2000 HealthBoards Testimonials 0 05-16-2006 04:42 AM
Should I see an immunologist, and how do I find one? PatNJ Immune Disorders 52 08-05-2005 09:42 AM
Just wanted to say thanks. Kamamoo Panic Disorders 2 05-15-2004 06:28 PM
Info Please Neck Disec & Fusion C 5-6 6-7 arkcheri Back Problems 22 04-14-2004 06:46 PM
Smoke Free Daily Journal Genecanuck Smoking Cessation 57 02-10-2004 06:19 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



MSJayhawk (937), MSNik (497), Snoopy61 (54), J-one (13), Whimpurr (13), shahila (12), JodiH (11), MS22 (11), KingBaxter (10), Canadian gal (10)

Site Wide Totals

teteri66 (1136), MSJayhawk (941), Apollo123 (855), janewhite1 (823), Titchou (769), Gabriel (743), ladybud (667), sammy64 (666), midwest1 (654), BlueSkies14 (610)



All times are GMT -7. The time now is 11:04 AM.



Site owned and operated by HealthBoards.com™
Copyright and Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!