A very good friend of mine (I've know her for 30 years)is being tested for MS. She is going in tomorrow for the results of her MRI and they did tell her that they found something. She is a nurse and knows all about MS and is scared to death. She does have some of the symptoms.
For those who are religious, maybe you can think good thoughts that she'll be ok. She's only 30, just started her nursing career is getting married next month and just had a house built. She doesn't need a MS diagnosis.
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
I was scared that I was getting MS. They've ruled out Lupus, Parkinson's, and Lyme Disease, but I've still to get an MRI to specifically look for brain plaque n stuff. I'm sending good thoughts out for your friend. Please let her know she has people thinking of her.
Hey Tina - my mom has MS. She has a mild case of it, and is able to manage it very well. She gives herself injections once a week of a drug called Avonex which keeps it from progressing. Avonex Website She also has a muscle relaxer that she takes at night to help her legs relax so she can sleep. Other than that - she's great! I know MS can be a horrible thing - but my mom is lucky to have only a mild case right now. She was diagnosed about 3 or 4 years ago and besides a couple bumps along the way, she has been doing great!
I am also so scared about getting MS.. it is one of my worst fears.
My grandma who has since passed at the age of 65 had MS, and died from complications of it. She was diagnosed at the age of 30 and had it for more than half of her life. Luckily times have changed and the treatment is improving, so your friend has more options than my grandmother did if she is diagnosed with it. My grandma was able to walk for about ten years, then needed a walker, and for the last twenty she was in a wheelchair more often than not. She could walk with a walker but it took her a lot more time to get anywhere, so she generally rode in the wheelchair because it caused less pain. MS can also cause other symptoms and my grandmother was unlucky and got most of them, such as bladder problems, problems with eyesight (she had to wear very strong glasses most of the time, MS induced diabetes etc.
I hope that your friend does not have this diagnosis, or that if she does, she can manage it better than my grandmother could. I know what i'm sharing is very depressing, but that is the realistic picture of my grandmother's life with MS.
Thanks Ashley. One of my friend's mom's actually has MS and it's destroyed her life. She can't walk on her own anymore and is basically debilitated because of it. But her mom is close to 70 so I am guessing she must have a severe case of it.
I just hate that so many happy and vibrant people get shot down with diseases and illnesses.
my grandpa has done a lot of research on it, and supposedly it is not a highly genetic disorder, however, there also isn't a lot of information about what actually causes it (so i'm crossing my fingers that that is true.. its supposedly prominent in people that are scandanavian and seems to be triggered by people moving from a cold environment to a warm or more moderate environment.. something to do with the equator).
It is so sad though how many people have awful diseases and disorders that are so debilitating. youd' think with all the new innovative things in this world there would be a lot more cures!
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
I'm slackin' at the job right now. It's kind of funny being an outsider (contractor) looking in. Everybody's running around with their tie on fire because some huge client's here. I totally don't even care.
BF and I have contracted some weird thing, and I think this new job's totally to blame.
We've both felt like puking for the last 3 days. When I eat it goes away for a while. So weird. I think I've contracted some new job virus from the subset of new foreign germs I've been subjected to, starting at a new office. Boooooo!
My cousin does but her's isn't debilitating (sp?). She has bad days but they don't think she will end up in a wheelchair. Tory's aunt has it too and I just found out our area where we live is high in MS, thyroid and cancer. Maybe another reason to move away.
its not as scary as it sounds... all 3 of them have had bad days.. one is in a wheelchair but he's 20+ years from diagnosis and modern treatments have stopped the progress of the disease greatly in recent years..
Bill's cousin once she got past the original issues and onto good meds has done just fine with minimal deterioration in the years since she was diagnosed.. my friend Sherry has done amazingly well.. she's been using an herbal remedy mixed with conventional meds and other then 2 brief setbacks that once she readjusted meds she overcame is still just as active and everything as pre diagnosis and thats been almost 12 years...
There is a lot out there!
-------------------- Dietetics Student (anticipating RD exam in Aug 2010)
IBS - A
Dairy Allergic
Fructose and MSG intollerant
My father has MS. He first started having symptoms 20 years ago but it took several years to get a diagnosis (stupid doctors kept insisting he had arthritis). His case is pretty severe and he is confined to a wheelchair. He is only 52, it just makes me sick. His brother and one of his sisters have it, as well as his mother, so I refuse to believe that it isn't at least somewhat hereditary. My sisters and I all have the fear of getting MS tucked away in our minds -- we're all now reaching the age where symptoms start appearing, so it's a little scary.
They do have better drugs for MS these days, but the key is to stop the progression. For people like my dad, there isn't much you can do other than treat symptoms. If your friend is overall in pretty good shape, there's a good chance she could still go on to lead a normal life. And there are a lot of people who only have mild cases of MS.
Hopefully she doesn't have it, but like many other people have said, it can be very treatable. I wish her the best.
-------------------- jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
what are some of the symptoms your father had when he was first diagnosed? I am also scared about getting it but I don't even know what to watch out for? I do know that most people are diagnosed in their 20's and early 30's which is insanely scary!!
basically into remission with drug therapy and other things now... of course that means meds for the rest of her life probably, but thats better then the things that used to happen with it.. Dave is in a chair, but otherwise fine because he was that advanced with it before some of the new meds came out.. It's nowhere near as scary a diagnosis as it was years ago, and there are still advancements being made.
Amie
-------------------- Dietetics Student (anticipating RD exam in Aug 2010)
IBS - A
Dairy Allergic
Fructose and MSG intollerant
Reged: 11/04/03
Posts: 5918
Loc: Northwest Washington State
The managing partner of the law firm where I last worked has had MS for a long time. He managed it well by exercising every single day. Despite his heavy court schedule, the man NEVER missed hiking in the hills on his lunch hour, taking a shower, then returning to work. He never ate anything with any sugar in it -- EVER -- and no fats either. Despite all the donuts and cookies brought into that office every day, he would NEVER touch the stuff. His daily lunch was a turkey breast sandwich on whole wheat with NO MAYO, only mustard. He treated himself to one martini a night, never two.
On occasion someone would spot him slipping, but he quickly caught himself and no one ever commented; it was as if it didn't happen. I've never seen anyone so controlled who refused to allow his body to have the disease. It worked for him for over 11 years that I worked there.
I understand that there is a cancer drug that has been recently tested on MS patients and has actually helped them; unfortunately, I don't know the name. I saw them talking about it on "Good Morning America" a few months ago. You might have your friend check it out.
Ashley, I was pretty young when he was going through the diagnosis ... the main thing I was aware of (because it was visible) was the muscular problems. From as far back as I can remember he walked with at least sort of a limp. This got worse, he progressed to crutches (canes didn't help), to crutches/wheelchair, and now he's permanently in wheelchair/cart. Basically he was losing control of his legs. He also had erratic vision problems and would get numbness in his feet.
Obviously there are lists on WebMD, Mayo, etc. -- it's a neuro disease so it's the stuff linked to your nervous system that starts breaking down. Bladder/bowel problems are common (constipation is the norm for MS, though), vision problems, numbness/tingling in limbs, loss of control in limbs.
One of my older sisters freaked out two or three years back because she thought she was developing symptoms, but she ended up OK after all. So I just push it to the back of my mind and don't think about it. If it's gonna happen, it'll happen no matter what amount of worrying I do.
Interestingly enough, I have endometriosis and research is beginning to point towards endo being an autoimmune disorder. Studies show that women w/ endo have a much higher rate of things like MS and Parkinson's in the family. So hopefully Someone will consider the endometriosis enough and I won't get MS.
-------------------- jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
Here's her email. Not 100% sure what to make of it.
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Quote: Well, I am a bit relieved..at least so far. They found something, but they are unsure what it is. It could be mucous, cholesterol or a very slight chance of a tumour. It is located near my petrous bone, in the temporel area. I believe he said it is in my internal acoustic canal. He is sending me on to the neurologist to follow it up. I may need to go for a CT scan of the temporel area to further assess what it is. The doctor was really reasuring and said that the chances of it being a tumour are very slim.
My follow up appointment is May 4th with the neurologist.
YES! I HAVE HAD MS FOR OVER 20 SOME YEARS-DON'T BE SCARED!! I AM ALSO DEALING WITH THIS IBS FOR OVER 1 YEAR, I NEED HELP WITH THAT-SUCH PAIN AND NOW I'VE DEVELOPED A SALT DEFICIENCY. I CAN HELP ANYONE WITH MS, I AM NOT IN A WHEEL CHAIR AND BETTER WITH THAT THAN I'VE BEEN IN 20 YEARS-I CAN HELP WITH THE MANAGEMENT OF THAT, THERE ARE KEYS TO SUCCESS-KEEP MOVING !! EXERCISE- MOVE WHAT YOU CAN-TAKE SALMON OIL, ETC. ANYONE THAT WANTS TO TALK ABOUT IT, WRITE ME. I NEED HELP IN MANAGING THIS IBS. ANYONE HAVE A SALT DEFICIENCY WITH IT?? :
When I read her email, my thought was that it was good news. Sounds like it's not MS...and probably not a tumor, according to what the doctor said. I think it would be unethical to give her false hope by saying the chances are slim it is a tumor.
Keep us updated Tina. She is lucky to have such a caring/concerned friend!
-------------------- ~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Anyone know someone with MS?
