Introducing myself to the group

carilyn39

Hello all. I am 41 years old and was diagnosted with MS 15 years ago. Started with the right side of my body going numb. I have had some pretty scary episodes in this time. ranging from the numbness to optic neuritis (my spelling is horrible) in my left eye that never really returned to normal vision. Then 2 years ago i had virtigo so bad coudn't move in bed at all without vomiting. that stunk bad. I have been on 3 different injection meds but now for about 1 1/2 years i have been on Giylenia. THANK THE GOOD LORD FOR THE WONDERFUL LITTLE PILL! nothing better then no longer having to stick myself daily, 3 x's weekly or weekly. it is working for me, no real symptoms to speak of with exception to today.

today i walked into work with another lady, trying to have a conversation. and i kid you not, I could not form simple words. Laughed it off of course, but for about an hour i was not sure what in the world was happening. I was having trouble comprehending anything. I prayed HARD! did not want to relapse with Christmas coming up. so I took some deep breaths and tried to relax and now i am feeling better.

this turned into a huge post... i appreciate having this group available with people who will understand what i am talking about. everyone have a blessed Christmas and enjoy your time with family and friends.

rocky282

It's great to meet you, and no worries my spelling is terrible too :-) I am going to physical therapy for Vertigo now and I have to say, I HATE being dizzy too. I think the treatement for the Virtago is worse than the disease though lol That first day after she reset my inner ear, I spent almost 9 hours barfing in the toilet. lol It did get better after that though.

Yay that Giylenia is working for you, you are the first person I have come across who it is working for and that is AWESOME. I keep going between whether it is worth me giving it a try or whether I just need to say no. I know there are concerns with BP and heartrate with that drug and both of mine are pretty low.

I look forward to chattin gmore with this group it is gonna be GREAT!

psmd

Sorry to hear all that and glad you're feeling better! Vertigo and nausea sound terrible . I have been on Gilenya since August (my first medication) and so far I've been doing well. I just get re- activation of my old symptoms when I work out or drink alcohol but it's improving month by month slowly. The only thing with Gilenya is that I always feel like I'm about to get a cold (slightly sore throat) but I don't. I think the blood pressure is only with the first dose, you have to take in and stay in the doctors office for six hours while they monitor your vital signs. Mine was normal the whole time.

Anyway I'm hoping that with the medication and healthier lifestyle that things will be okay! Good luck and hope your holidays go okay!

Christina

mdfishinggirl

I, too, am sorry to hear about all your MS experiences. I have been on Gilenya for three years. Two years as a clinical trial patient. In my experience (and this is completely MY experience), I have not had a relapse on G or any worsening of symptoms. My MRI's show no disease progression. Is it Gilenya? Who knows.

PSMD is right, the decrease in HEART RATE is a known side effect, but if it does occur, it will happen in the first 6 hours (thus the observation period) and will go back to normal within a month. That being said, most people do not even notice the decrease. It is usually only a few beats per minute. You have to have a heart exam before starting and would certainly want to let the doctor know of any preexisiting heart conditions.

I, too, felt like I had a cold in the beginning, but that went away eventually. I know that not every drug works for every person, that is why I like to tell people to work with their doctors to find what might be right for them. I am very grateful that we live in a time when so many new options are coming out for those of us with MS. There are so many new drugs being developed and many that will be on the market this year. Until they find a cure, I remain hopeful!

As far as cognitive function (or forming words), I noticed that with the stress of the holidays, I was also having trouble making my mouth say what my brain was thinking!!! Then, I started to not even think clearly. You did the right thing, but taking it easy and not getting to worried about it. I think these things happen with stress (even the good kind of stress!). Hang in there. It is good to know that others can understand what you are going through and are not alone.

Happy, Healthy New Year to you!!!

Benji49

Hi, I am 50 and was diagnosed first with Optic Neuritis in Feb 2008 and then with Relapsing Remitting MS in March 2008. I started Rebif injections in Oct/08 and was taken off in Feb/10 because of really bad reactions to the build up in my system. I have been on Copaxone since Mar 2010 and have only had one really bad (for me) relapse which started Feb/11 and ended May/11. Stress and overwork seem to bring them one (expecting another one this Feb because that's how my job goes.)

My left optic nerve is permanently damaged so I have limited vision in that eye and sometimes it just fogs over completely. I have almost no vision left at night, and I'm now partially colour blind! I have actually gone to work with one black and one navy shoe on (same shoe style). :blushing: It took a couple of years before my husband would actually believe that I wanted him to tell me if I looked OK - does my outfit match???? And I've found a few dress shops that actually believe me and are more than willing to help me co-ordinate - it's amazing that some store clerks think you're joking! Who would joke about it????

My MS relapses generally start with one side of my torso going completely numb - that will go on a few days and then the pains hit! It's like someone has an electric prod and they are trying to punch a hole through from the back to the front and then it just radiates out from there. Breathing hurts! My day to day MS is just some numbness in the feet and legs and balance problems, sometimes double vision but that's been a while since that happened.

I'm looking forward to having a group that actually understands that some days you just can't exercise. It's not that I don't want to....

Bea

mdfishinggirl

I'm looking forward to having a group that actually understands that some days you just can't exercise. It's not that I don't want to....

Bea

I am right there with you, Bea! Thank you for sharing your story!
Missi