MS Newbie

[Nicoly3467]

Hi Everyone,

I got diagnosed with MS in November 2013. All of my major symptoms started last summer (stiffness in legs, major fatigue, and had a cloudy eye one day). It took about 3 months for the doctors to figure out what was going on with me. I went through a battery of blood tests and then September when I got the blurry, cloudy eye, it sped up the brain MRI's and spinal tap. It was a hard thing to accept when I was told I have MS. All the fear and questions went through my head like will I be paralyzed and in a wheelchair, etc. I thought the worst.

I have RRMS and had 2 relapses this year back in Feb and March. I was initially on Copaxone for several months then got switched to Rebif in May. So far, I have not had another relapse and it has been 5 months! I am happy about that. It has been a challenging, rocky road though. Everyday I do not know what to expect with this disease, but I try to make the best out of it by keeping a positive attitude (on most occasions but sometimes it is very hard when I am not feeling good), exercising, and eating a healthy, well-balanced diet.

I worry about the future sometimes how I will be next year or in 5 years, but that is when I try to stop myself and just focus on the day. My legs and the fatigue are the biggest problem for me. On a good day, I can walk 1-2 miles and other days no more than 1/2 mile depending on my leg strength. It frustrates me because I used to be a marathon runner but now instead I use the elliptical machine at the gym and bike ride.

I have learned how to modify my life and rest when I need to and do things differently. My husband and son see the major differences with me when I have to lie down everyday because of fatigue and cannot walk as far when we go places. They are still adjusting too.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Seasha]

Welcome to MSWorld, Nicoly!!

We're glad to have you on board. It seems like you are doing the right thing by being on a DMT, exercising, eating well and maintaining a good attitude. All these help in keeping a healthier YOU in body and mind.

Yes, it can be challenging at times with the adjustments we need to make, but we all learn this skill of modifying our lifestyles at one time or another.

I hope you have an easy course on your new journey. Again, welcome and come back often

[Nicoly3467]

Thank you!

Seasha-thank you for your nice comments and welcoming to the group!

I will be checking back often.

Nicoly3467

[Mamabug]

Welcome Nicholy.

Thanks for sharing. I'm also glad that you shared about your medication switch. I had the opposite experience; I was switched from an interferon (Betaseron) to Copaxone, which for me, is more effective. It's good for members to be aware that different meds work for different people.

If you are having one or more flares per year on your current MS med, it is only borderline effective, and maybe a different med would work better for you.

~ Faith

[22cyclist]

Hi Nicholy: I have had MS for 10 years, and presently am SPMS. I so get where you are coming from when talking about giving up running. I used to only run 1/2 marathons, and lots of 5Ks with a running group before being diagnosed and for about a year after being diagnosed. I also ironically also rode in the MS 150 bike ride for about 5 years before being diagnosed, and I still do, just now on the back of a tandem. It is so hard to watch my husband and friends keep on running and I have to sit at home and wait. Sometimes I go on my scooter and drive along with them. Now, I need toe-off braces on both my legs and use a walker, or wheelchair.

I sleep a lot, so I try to just look at it like there is no way I can do this anymore, but I do go to the gym two days per week and workout with a trainer.

I am glad you have come to terms with your disease. For me, its a daily struggle. As someone else said, if your current medication doesn't keep you from having less than one relapse per year, change it. There are more effective medications out there. You are young in your disease so no need to jump into them until you are progressing.

Take care
Lisa

[Nicoly3467]

MS Newbie

Hi Lisa,

Thanks for your reply and the medicine info. That is good to know regarding monitoring number of relapses per year.

I admire how you have been doing the MS 150 mile bike ride. That is so great! Over the course of how many days is this? I would love to to do a bike ride for MS but I would have to train a lot because I can only bike ride about 5 miles in one day...oh boy! Anyway, good for you that you are keeping up with your exercise.

My neurologist told me when I got diagnosed to keep my legs moving so I made that one of my constant goals; Since I have so much spasticity and stiffness it makes sense. Stretching helps me too.

Nikki

[Nicoly3467]

MS Newbie

Hi Faith,

Thanks for the info on the medicine and glad to hear the Copaxone is working for you so well. I was bummed to have to switch but I sure like the Rebif Rebidose of 3x/week instead of the daily Copaxone.

Nikki

[Diamond57]

Welcome!

Hi Nicoly3467!

I'd like to welcome you too! I was diagnosed with RRMS June 28th. Didn't begin treatment until 7 weeks ago. I am on rebif with the auto injector and I find very easy to do. I did have a couple that were defective and the company is sending them to me at NO CHARGE. It was my pharmacist who helped me with that because I put up such a stink they were going to charge me $1500.00. In the end it all worked out. Just curious if your haveing any side effects??? The 8 mcgs was managable for me but got real sick on 22mcg which I'm still on but my neurologist prescribed 500mg. of Naproxon to take a half hour before injection and made a world of difference. This site has been amazing to me. There are sooooo many people like Faith, Seasha and Marco with such knowledge and motivation. I too try to stay positive......kinda hard when I was sick but I too am changing my diet slowly and notice some difference. Pacing myself is still something I'm learning but everything can't be done all at once. I excersise and love to walk. It's nice to see you are on the site and wish you the best.

Take good care off yourself and look forward to your reply on the rebif. Tomorrow is my first appointment with my Neurologist since being on treatment.

My best.....
Susie Q

[Diamond57]

P.S.

The fatigue is overwhelming to me!

[Nicoly3467]

MS Newbie

Hi Susie,

Wow, you are very newly diagnosed. Glad to hear the Rebif is working better since you take Naproxen before. What were some of your first symptoms you had before diagnosis?

I am using the 44 mcg Rebidose Rebif and worked up to that over 3 months ago: 8 mcg 22 mcg and now 44. I do my injections at night (Mon-Wed-Fri) and sometimes several hours later, I have a slight temperature and more inflamed pain all over my body. When it happens (which is about one day a week) I take one extra strength Tylenol and that helps to calm the nerves down as my Neurologist says. I believe when these symptoms happen, it is the body fighting against the immune cells from attacking the nerve cells; so it's a good thing, but feels bad physically at the time. The next morning that goes away.

Great to hear you are exercising and eating healthy! I went "gluten-free" in the Fall recommended by my Neuro doc. I have not noticed any improvement with my MS symptoms except my digestion is better! So, I decided to continue on this path. I eat a lot of fresh veggies, some fruit and take a B complex & multivitamin daily.

Best wishes on your appointment Monday! Nikki

[Nicoly3467]

MS Newbie

Susie-Yes, the fatigue is horrible! The Rebif has helped give me some energy and stamina, but not fully. The fatigue puts a damper on the whole day and what I can do. I learned I am most energetic in the mornings, so that is when I get things done because later in the day is never that good for me. I heard before that a person with MS starts their day with a 1/3 tank of gas, and you have to find ways to conserve that throughout the day cuz when it's gone, it is gone! Right now this week, I am testing out Provigil 50 mg-very small dose, but helps a little with the fatigue in the afternoons.

The fatigue is overwhelming to me!

P.S. I hope you can see my 1st reply to your other message on the thread. I am still learning how to do this.

[Diamond57]

Reply

Hi Nikki,

I didn't forget about you and yes, I received your message. I will get back to you soon. My appt. yesterday was alot to take in and today I'm just to exhausted to write. You'll hear from me soon.

Take good care...........
Susie Q

[Diamond57]

I found the thread! YEA!!!

Hi Nikki,

Hope you are doing well today. I am much better and feel I can write what you asked about. First and foremost I am so sorry for your struggles and maybe we can help one another and all of us. I am a young 57 yr. old woman. When I was 13 I was diagnosed with severe chronic depression and have had two breakdowns and had dilopia(double-vision) also at 13. My Neuro said it could have gone back to my early ears.

1999 I began with extreme tingling, numbess, weakness on my rt. leg and began on the left side also. They had me running in circles, at the time I was married and my ex was very supportive. My rheumatologist sent me to Mayo Clinic and was diagnosed with fibrmyalgia.

To make a long story short the symptoms had come and gone and I had a breakout of symptoms when my 44yr old brother passed. I just took it easy even though I had a highly stressful job and was a perfectionist and later through all my years of counseling found out.....perfection was my enemy.

Again, in a matter of time things got better and again in 2008 I really started with symptoms that didn't go away as fast. Went to the Doc adain they said it was fibromyalgia. I started getting very sick last August and truly have not had much reprieve and decided to go to a neurologist.

We clicked and new with was going to be my partner whatever I was diagnosed with. This was in February did all the tests and re-testing and in June was diagnosed. I even went and got a second opinion. Very fast diagnosis. I've had alot of cognitive problems, MS Hug, numbess, a couple of falls and the list goes on.

My biggest fear with Rebif was thinking of the depression, but as I said doing good. I have some problems when I titrated up but now it's manageable. An you know the fatigue sucks BIG TIME!!! I'm slowly changing my diet etc..etc.. He is going to keep me on the 22 mcgs for two more months. I hope your questions have been answered from what you asked me. My fingers are getting numb and will have to close for now. I will do anything to help myself to beat this disease. I will keep you in my thoughts of positivity. LOL!

My Best....

Susie Q

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Nicoly3467]

Hi Susie,

I hope the Rebif does well for you. You have been through a lot with various symptoms over the years so glad you got more clarity on the diagnosis. MS is not easy to accept; everyday seems like another challenge to deal with. It can be very frustrating but keep taking your medicine, eating healthy and trying to exercise.

Yes, the fatigue sucks! It has been a little worse for me lately so I just started two weeks ago taking Provigil, low dosage
(50 mg) to fight the fatigue. It helps, but it is not a miracle and I should work up to 100 mg (regular dose) but not sure if I'll get shaky. The 50 mg does not seem to be a problem.

Yes, let's keep in touch on this site! Nikki