March 8, 2007 1:55pm CST
I was diagnosed 4 years ago with m.s. and cancer. I survived the cancer with surgery and radiation, but I don't know about this m.s. thing. I don't know anyone with it, and would love to meet people who can share some of their feelings and experiences. I am taking copaxone, have lots of flare ups and get scared. The doctors have me on so many meds that I'm sick from them, so I stop and start them a lot. I'd love to hear from anyone who has M.S.
10 Mar 07
Heyah snickers! *hugs* I've had MS since about 1995... I don't why anyone would tell you not to listen to people who have had it for some time. People who have had it longer have a deeper history with it and the medications including symptom medications and tests etc... We've been through it ALL! I can't believe you had to deal with cancer too! You'd think the powers that be would say okay she has MS let's leave it at that GRRR but it's true we can have other things anytime. I'm so glad you've beaten the cancer and I hope it never comes back! Numbers on MS have shot up 50% in this last yr alone with all the new understanding on MS in the medical field and society in general! There are tons of places to meet fellow MSers and get great support and learn. There are great groups on MySpace and MSN and Yahoo etc... and there are chats first and foremost MS World.org almost alwyas someone there! I am on Betaseron and chemotherapy as well as symptom meds, I have been a lab rat and done alternative therapies etc... & I keep on top of allt he info in hope of being the first to see we have a cure! Or treatment as good as! It is coming! Nice to meet you :)
• United States
9 Mar 07
First of all, I can relate. I had brain surgery and then got diagnosed with MS. Brain surgery--cool. MS--not so cool. Get on the meds and if it is an insurance or money issue, contact NORD, www.rarediseases.org and they will help you pay for them. Don't listen to anyone who was diagnosed more than 12-15 years ago. They had no treatments and we do. Listen to your body. You will be fatigued and need to rest more often than normal. And watch being in the heat and very cold temperatures. I also take Copaxone. Listen, getting on and off of them does you NO good. Your body will adjust, but it takes time. What else do they have you on? Understand this: You will wake up tomorrow and have to accept that you have MS. And you will wake up next week and have to accept that you have MS. And a year from now you will wake up and have to accept that you have MS.
• United States
8 Mar 07
Hi Snickers, My name is Paulette, and I have had MS for over 16 yrs. Currently I am not on any shots but, will be doing beta soon again. I have tried all the shots, and use beta just didn't want to do it so I stopped last Oct. Actually I didn't want to have to deal with them while traveling. I also use neurotin for nerve pain, and use meds for my bladder. I also have a few more I use for other things plus vitamins. ON (optic neuritis) did come into picture about 3 yrs ago for me. My left eyesight is not that good. I have cognitive issues, bladder, numb tinglies, balance, fatigue ect. I try to stay positive, and I am fortunate as to where I am at. I am still standing and walking. I have a good support group, who is there when I need them to be. I am the only one in my family who has MS so, it was a bit scary in the beginning not knowing. Bummer you had to go through cancer as well. Glad you have survived the cancer. Which meds make you sick? Just curious to know. Hope to get to know you, hang in there you sound like one strong person.
8 Mar 07
Oh! I'm so sorry for you. Hope that you get well soon. If you don't about this MS thing then lemme explain it to you.Multiple Sclerosis (abbreviated MS, also known as disseminated sclerosis or encephalomyelitis disseminata) is a chronic, inflammatory disease that affects the central nervous system (CNS). MS can cause a variety of symptoms, including changes in sensation, visual problems, muscle weakness, depression, difficulties with coordination and speech, severe fatigue, cognitive impairment,problems with balance, over heating, and pain. MS will cause impaired mobility and disability in more severe cases. i'll suggest you to go through this link: http://www.mult-sclerosis.org/DavidsStory.html Multiple sclerosis affects neurons, the cells of the brain and spinal cord that carry information, create thought and perception, and allow the brain to control the body. Surrounding and protecting some of these neurons is a fatty layer known as the myelin sheath, which helps neurons carry electrical signals. MS causes gradual destruction of myelin (demyelination) and transection of neuron axons in patches throughout the brain and spinal cord. The name multiple sclerosis refers to the multiple scars (or scleroses) on the myelin sheaths. This scarring causes symptoms which vary widely depending upon which signals are interrupted. The predominant theory today is that MS results from attacks by an individual's immune system on the nervous system and it is therefore usually categorized as an autoimmune disease. There is a minority view that MS is not an autoimmune disease, but rather a metabolically dependent neurodegenerative disease. Although much is known about how MS causes damage, its exact cause remains unknown. Multiple sclerosis may take several different forms, with new symptoms occurring either in discrete attacks or slowly accruing over time. Between attacks, symptoms may resolve completely, but permanent neurologic problems often persist; especially as the disease advances. MS currently does not have a cure, though several treatments are available which may slow the appearance of new symptoms.
• United States
8 Mar 07
Oh wow, a double whammy! :-( I have relapsing remitting MS. I'm currently not on any meds for MS because when I was on Rebif it made me sick. I vomited every day. I have a lot of stuff I'm supposed to be taking, LOL. I do take vitamins and blood pressure meds. I take the vitamins so I won't get one of the 3,000 colds my son brings home from school. Anything MS related makes me feel worse than if I don't take anything at all. I'm supposed to be taking...I don't even remember now. Betaseron or something. Since I stopped the Rebif I haven't had any flare ups. My left leg is weak and I've had to start using a walker, but not Optic Neuritis. That's why I'm reluctant to start taking anything new. I remember that I didn't feel like doing ANYTHING when I was on Rebif. I spent most days in bed. I don't know. It's a drag. I have developed a new loathing for doctors, LOL. They can't DO anything to cure this. All they can do is treat the symptoms. And the side effects of the medicine (for me) are always worse than the actual symptoms. Good luck! (Sounds pithy, but I don't know what else to say, LOL.)