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MS ForumsIntroductions & Personal StoriesNew to MDJunction and MS Support Group
05/30/2010 11:44 AM
theresa58
Posts: 2
New Member

Hi, I am new to any MS Support Group, have had MS for a couple of years,(Dr. not really sure how long due to nothing showing up on tests but I have been showing symptoms for several years now)I also have Fibro for 12 years, Pheriphial Neuropathy 8yrs., and Seizures 7 yrs. for no explanation why. I am on many meds. trying to treat all illnesses, was on Rebif for a year but the flu never went away no matter what I did and my depression got worse so the Dr. took me off finally. Then we decided to try Copaxone, on this for a year, no side affects which is great. However, I never seem to be in a remission for no longer than 2 days and over time I have rapidly been showing all MS symptoms. I'm pretty scared. My life has become pretty sedentary and depression is getting worse no matter how hard I try to stay up, I hate it. Does anyone out there have any suggestions from their experience.
Theresa
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05/31/2010 08:06 AM  Top
mvgallegos
mvgallegos
 
Posts: 439
Member

Welcome to the group! You will find great support here.

I also suffer with fibro and MS, the best things I advise are:

Keep yourself hydrated, water should be your best friend.

Excercise, even if just a little.

A good support system.

Positive attitude.

Sunshine does wonders for me, really enlightens me.

Again, this is all things that help me, hope you can find something that helps you.


05/31/2010 09:36 AM  Top
MissStacey
MissStacey
 
Posts: 14847
VIP Member
I'm an Advocate

Welcome! I also was told for the past 10 years they thought I had MS by my severe symptoms but it could only be proven diagnostically over a year ago close to two. I also am on Copaxone injections and was told the MS meds are intended to stop the progression of MS to prevent more lesions from developing. It really doesn't have anything to do with the symptoms. Some people go into remission and have less flares/less symptoms while treating but it's just not a guarantee for everyone. I haven't been symptom free either, I was dx'd but have only been on the treatments for about 4 months. I need to have my follow up MRI to ensure it's even doing it's job. I love Copaxone, it has no negative side effects. I take pain meds and muscle relaxers so basically try to alleviate symptoms as they come. I also suffer from multiple conditions listed below. Good luck and keep us updated. Stacey Wink
I suffer from Rapid Progressive MS, Lupus, Fibromyalgia, Epilepsy, Migraines, Neuropathy, IBS, Narcolepsy, Arrythmia, Arthritis and too much more complete list on profile.

"Just because we have the right to disagree with a person, does NOT give us the right to disrespect that person."

I'm not currently active due to many personal and medical issues. I will not be participating in MDJ for awhile, my thoughts and prayers are with everyone. I hope everyone is well and I appreciate all of the thoughts, kind words and messages. I have tried to respond as much as possible and apologize if I have not gotten back to everyone. Love & Hugs, Stacey

06/06/2010 11:06 AM  Top
elseaeff56

Good Day Theresa!

I'm sorry to hear that you are having such a hard time with your MS. You've come to the right place to share your experiences, complain about what's bugging you, find an understanding shoulder to cry on and even a 'soapbox' on which to vent. Everyone here at MDJunction is in the same boat as you -- and everyone here is ready to 'hold your hand' and help you through the dark hours.

I've been on Avonex since it came to market. I know that just thinking of having to make myself so sick every week for a 37% chance of maintaining the status quo of the MS weighs heavily on my mind. I suffer terribly every week, fevers, aches and pains like the worse flu you've ever had, chills and from start to finish I lose about 30 hours. Definately something to be stressed about, which is one of the triggers of MS.

Your enemies are fatigue, heat, bad nutrition and stress. In any situation, these are the things that will bring on the exacerbations.

I have learned that the only way to deal with MS is to fight - fight hard! You've got to eat healthy food, exercise your entire body (whether you go to a gym or work at home doing yoga and Pilates, and stay on the ABC drug that you've elected to take.

I tried Copaxone, but it made me feel strange, like my hormones were out of whack. I've never tried Rebif because it's Avonex, just in different quantities and time applications.

There are times that I want to give up, but I've got 3 grown children and 4 grandchildren that I want to spend time with. My kids have all studied and educated themselves on MS, making it much easier to deal with the disease.

It is a falacy that MS goes into remission. It never stops working on you, you just might not see any outward exacerbations. No one's MS is the same, your immune system attacks your central nervous system at will - and where it may affect you is nowhere near or how it attacks and affects me.

I have plaques on my cerebellum which has messed up my balance and give me tremors. I have plaques on my frontal lobe, the powerhouse of the brain. I have lost cognitive skills such as comprehension -- whether it's reading something, looking at a map or listening to someone. There are times when I take a step and my leg isn't there for me. Sometimes I talk in something that I can only describe as doublespeak. I will take walks in the neighborhood to exercise and find half way through that I'm lost in the neighborhood that I have lived in for more than a decade. I just sit down on the curb until I remember. If I panic, I won't remember. I have a PDA for tracking my information and appointments and a GPS to get me to and from my doctor's offices.

Frustrating, yes. Frightening, yes. There are times that I'm even angry at God for letting all of this happen to me. But in the end, it's up to me to fight this thing and keep myself healthy.

I, too, get severly depressed from the Avonex. I've never had suicidal thoughts as are described in the Avonex brochures, but there are times I've felt homicidal! LOL! Just kidding. I had a nervous breakdown last winter. Dealing with my illnesses, a daughter in law that refused to let me know anything about my son in Afghanistan and my grandson, almost 2, is a stranger to me because she doesn't want him speaking to me or being with me until he's 18. He's been diagnosed with a mild form of Spinal Bifida, his brain stem is too long and rests on his spinal cord. This she blames on me. I gave him the bad genes that caused this problem. My family disowned me when I became ill, they thought that I was faking the symptoms and acting like the injections were bad. I couldn't take it anymore and wanted to give up, to just not be. Not suicide, just not to be there, hurting, getting cancer on top of everything else and being blamed for my grandson's illness.

But I perservered, I didn't give up and now I'm back on my feet and getting stronger every day. I'm dealing with a pinched nerve in my pelvis right now, but other than that, I feel relatively healthy. Strange things also happen to me, I can sleep for days without knowing and I can turn into the 'zombie' without any notice, not recognizing anyone or understanding anything they say. Laughing

Exercise doesn't only make the body strong, it will help you to eat better and sleep won't be a problem. It takes a week or two for the exercise to start making a positive affect on your life. You will become addicted to working out and staying healthy in no time! Yoga and Pilates not only strenghten and flex your body, but yoga can help with your balance, too.

Promise that you'll have no more scares, we're all here for you. No more worries, it brings on the exacerbations. No more feeling bad for yourself - this has happened to all of us and we will hold your hand through the hardest, darkest times.

Feel free to contact me with any questions or concerns.

Regards,

Linda


06/06/2010 01:01 PM  Top
MissStacey
MissStacey
 
Posts: 14847
VIP Member
I'm an Advocate

Copaxone is known to be the MS med with the least amount of side effects if you read about it you would see after injection some can suffer from flushing and racing heart that doesn't last more than 15 min. I haven't experienced it but it's the worst listed side effect. Everyone does react to meds in different ways of course. I have been lucky I just need to find out if it's doing it's job. There are a few injections I cannot take due to also having Bipolar Disorder so my list of choices is limited if this doesn't work. My BP has been stable for over a year with meds but I wouldn't want to take the risks. Wink
I suffer from Rapid Progressive MS, Lupus, Fibromyalgia, Epilepsy, Migraines, Neuropathy, IBS, Narcolepsy, Arrythmia, Arthritis and too much more complete list on profile.

"Just because we have the right to disagree with a person, does NOT give us the right to disrespect that person."

I'm not currently active due to many personal and medical issues. I will not be participating in MDJ for awhile, my thoughts and prayers are with everyone. I hope everyone is well and I appreciate all of the thoughts, kind words and messages. I have tried to respond as much as possible and apologize if I have not gotten back to everyone. Love & Hugs, Stacey
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