Aa
Acceptance of an MS Diagnosis
Hi all,
A few thoughts and questions:
If you are unfamilar with me I am 29 and have RRMS diagnosed 7 months ago and have been unfortunate enough to relapse 4 times since.
I had life planned to a T.
I was goning to have a wonderful husband, no mortage, a fine house, 2.2 children, an SUV and an exotic holiday at least once a year....... and that was my plan........ and seriously I thought I was almost there......Until MS hit me...
In June I had a desperate 1st attack. Loss of vision, L'Hermittes, intention tremour and a +ve MRI showing at least 9 lesions all most likely due to demylination. No LP as I had previous back surgery. Relapse of optic neuritis 5 weeks later.... firm diagnosis. (at least no limboland for me) and I'm on the fence about whether or not i'd prefer to be in "limboland" or where I am! Now I have MS. Its not going anywhere, there is no cure and I cant predict how its going to effect me. Now I'm not sure whether I'd prefer to wait and not to know..... strange isn't it when you get your answer for all of these unwarrented symtpoms? No I'm not crazy or no I didn't imagine that..... its all justified.
I have gone through the:
1) This wasn't supposed to happen to me stage. I dont have MS. (For a long long time)
2) Maybe its not MS maybe I have ALS or Devics ONM. (nearly passed out with this one! predicted half my life span all by myself)
3) I'm never going to make it through this. I'm going to be disabled. (like get me a wheelchair now cause I'll need it in a month I have all mentioned above No. 2).
4) Is it fair to continue in my 6 year relationship and have children? (what use am I to anyone now, Will my partner still want me longterm NO MATTER WHAT?)
5) Hit me with whatever you've got I want Tysabri or Mitox. (just blast me, I want it gone) I'm gonna be the next big thing on the news with the amazing "cured of MS story".
6) CCSVI is going to cure me. (I knew I'd pox it and be cured less than a year after diagnosis - no sweat)
7) I've been too optimistic with above this will take years. (see No. 6) Years I dont want to waste! (Back to No. 5 just blast me)........ and the cycle continues.
And suddenly I found myself consumed!!!!!!!!!!! Overwhelmed!!!!!!!!!!!!!!!!!!!!!!!!!!!!! MS was my life!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
My work, my family, my partner, my friends........ If it wasn't talking about me and my MS i wasn't interested in listening. And if I wasn't talking about it I was googling it..............
So I made an appointment to speak just with my neuro liason nurse about how "I was coping". As I work with her in the same hospital she was very helpful and understood all the above and saw all the same doubts and fears demonstrated in MS patients everyday and explained:
A long term illness diagnosis is sometimes like a loss.... there are various stages one needs to go through in order to accept diagnosis and function normally. She offered me the services of the MS societies very own counsellor with a 6 week course to get me to the "acceptance phase"........... There is something like denial, anger, ...... a few others and then finally acceptance.
Has anyone availed of this type of service and found it helpful?????
Not sure where I am at the moment. Have days where I dont think about MS at all and forget I have it. But have days where my life is doomed becuase I have it. . . . . Just want a normal day...... no injections, no twitches, to be able to see properly again (not out of a damaged right eye from ON), not to discuss MS or let it consume me, not to think about how it will effect me.
Just be me. without MS. Maybe someday.
Sharon
A few thoughts and questions:
If you are unfamilar with me I am 29 and have RRMS diagnosed 7 months ago and have been unfortunate enough to relapse 4 times since.
I had life planned to a T.
I was goning to have a wonderful husband, no mortage, a fine house, 2.2 children, an SUV and an exotic holiday at least once a year....... and that was my plan........ and seriously I thought I was almost there......Until MS hit me...
In June I had a desperate 1st attack. Loss of vision, L'Hermittes, intention tremour and a +ve MRI showing at least 9 lesions all most likely due to demylination. No LP as I had previous back surgery. Relapse of optic neuritis 5 weeks later.... firm diagnosis. (at least no limboland for me) and I'm on the fence about whether or not i'd prefer to be in "limboland" or where I am! Now I have MS. Its not going anywhere, there is no cure and I cant predict how its going to effect me. Now I'm not sure whether I'd prefer to wait and not to know..... strange isn't it when you get your answer for all of these unwarrented symtpoms? No I'm not crazy or no I didn't imagine that..... its all justified.
I have gone through the:
1) This wasn't supposed to happen to me stage. I dont have MS. (For a long long time)
2) Maybe its not MS maybe I have ALS or Devics ONM. (nearly passed out with this one! predicted half my life span all by myself)
3) I'm never going to make it through this. I'm going to be disabled. (like get me a wheelchair now cause I'll need it in a month I have all mentioned above No. 2).
4) Is it fair to continue in my 6 year relationship and have children? (what use am I to anyone now, Will my partner still want me longterm NO MATTER WHAT?)
5) Hit me with whatever you've got I want Tysabri or Mitox. (just blast me, I want it gone) I'm gonna be the next big thing on the news with the amazing "cured of MS story".
6) CCSVI is going to cure me. (I knew I'd pox it and be cured less than a year after diagnosis - no sweat)
7) I've been too optimistic with above this will take years. (see No. 6) Years I dont want to waste! (Back to No. 5 just blast me)........ and the cycle continues.
And suddenly I found myself consumed!!!!!!!!!!! Overwhelmed!!!!!!!!!!!!!!!!!!!!!!!!!!!!! MS was my life!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
My work, my family, my partner, my friends........ If it wasn't talking about me and my MS i wasn't interested in listening. And if I wasn't talking about it I was googling it..............
So I made an appointment to speak just with my neuro liason nurse about how "I was coping". As I work with her in the same hospital she was very helpful and understood all the above and saw all the same doubts and fears demonstrated in MS patients everyday and explained:
A long term illness diagnosis is sometimes like a loss.... there are various stages one needs to go through in order to accept diagnosis and function normally. She offered me the services of the MS societies very own counsellor with a 6 week course to get me to the "acceptance phase"........... There is something like denial, anger, ...... a few others and then finally acceptance.
Has anyone availed of this type of service and found it helpful?????
Not sure where I am at the moment. Have days where I dont think about MS at all and forget I have it. But have days where my life is doomed becuase I have it. . . . . Just want a normal day...... no injections, no twitches, to be able to see properly again (not out of a damaged right eye from ON), not to discuss MS or let it consume me, not to think about how it will effect me.
Just be me. without MS. Maybe someday.
Sharon
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Every morning when I wake up, I just think to myself that 'today I will do my best'
Life has thrown us a curve ball, and you have to put your best foot forward and carry on.
I have been dx for 10 years now, and still have days where I panic about what will happen to me - however I just carry on - we all have to.
Debs
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Every morning when I wake up, I just think to myself that 'today I will do my best'
Life has thrown us a curve ball, and you have to put your best foot forward and carry on.
I have been dx for 10 years now, and still have days where I panic about what will happen to me - however I just carry on - we all have to.
Debs
Dont rush acceptance. I myself havent accepted it and it has been 10 months. I never go one day without thinking about it because theres always a pain shooting here to there and twitches and so on. Me and my friend on here call it the WTF disease. Because everytime something happens your like WTF was that. All of a sudden your body shifts one way, you say WTF or a pain out of no where.. WTF cant walk.. WTF ect ect. Fits perfectly we say! I have good days and like you said days i feel like im doomed and feel i shouldnt be in a relationship because im a burden or noone will ever love me just pity me. ect ect. I have thought about therapy actaully to help me accept it and talk about it with someone more what and how imthinking. Proably will go that route. Go at your own speed and let your body feel what it feels, if you need help or someone to talk to then you go and do that. I also learned the strong are the ones who arent afraid to show themselvs and the weak are the ones that try to hide it all
Sharon, you've been given some wonderful advice here by some wise ladies. I'll add one thing Alex said in another thread (last week, I think): "I have MS. MS does not have me." She could say that; I still don't know what I have, but whatever it is doesn't have me, either. In fact, Alex is among the legions here who are partly responsible for it not having me. At least I think it was Alex! ({:>\
One other point; you can't rush the stages of grief, and there's no set timetable. It takes time to accept any major life change, and illness certainly falls into that bin (then promptly rolls out and lands in our way, sometimes even on our toes!).
One other point; you can't rush the stages of grief, and there's no set timetable. It takes time to accept any major life change, and illness certainly falls into that bin (then promptly rolls out and lands in our way, sometimes even on our toes!).
somehow, this did not take all my note...... I also meant to say,
Take care, and chin up .....
*HUGS*
Take care, and chin up .....
*HUGS*
wow, this is my life. As most of you all say too !!! I', still in the wake up everyday stage and think about it. But, how the heck can't you when you can't walk right, you arm hurts, your eyes don't focus properly, and you generally feel like crap !!! So, each day I try and say to myself " self , today is a new day, and maybe, just maybe we can get through it without anyone running away from us, or just trying to hurry up the phone call so they can get on their NORMAL way!!!"" I still haven't really gotten there,
I think I have over burdened my daughter, she was so very supportive at first, this is just last year I was told that I had MS, now just been told that it is secondary-progressive phase now, and she just seems to be in need of a break from me. Have any of you guys had that yet?? How do you handle it when your friends and family back away, because we are so much fun to be with in the early stages???
Could you let us know if you have PLEASE ???
I think I have over burdened my daughter, she was so very supportive at first, this is just last year I was told that I had MS, now just been told that it is secondary-progressive phase now, and she just seems to be in need of a break from me. Have any of you guys had that yet?? How do you handle it when your friends and family back away, because we are so much fun to be with in the early stages???
Could you let us know if you have PLEASE ???
There is a wonderful Health Page called "Acceptance--A Journey."
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Acceptance----a-journey/show/1028?cid=36
I hope many of you, especially our newcomers, will take a look at it. Please also feel free to add more here, and we can continue our Health Page accordingly. This is not a topic that we'll ever reach the end of. There are as many reactions as there are members here, and our own reactions evolve and change as life goes on.
From my vantage point I wholeheartedly concur with Alex's statement that control is an illusion. We have control over virtually nothing in our lives. But we do have control over how we react to what has happened. Holocaust survivors who had nothing else had this control, and many used it to triumph over adversity we can't possibly imagine.
If you are in a position of wildly fighting the idea of an MS life, that's okay. If you would rather not know than know, that's okay too. From kicking and screaming to calm acceptance and ability to make the most of it is 'a long and winding road.' Wherever you are on it, we are okay with you.
Stand strong.
ess
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Acceptance----a-journey/show/1028?cid=36
I hope many of you, especially our newcomers, will take a look at it. Please also feel free to add more here, and we can continue our Health Page accordingly. This is not a topic that we'll ever reach the end of. There are as many reactions as there are members here, and our own reactions evolve and change as life goes on.
From my vantage point I wholeheartedly concur with Alex's statement that control is an illusion. We have control over virtually nothing in our lives. But we do have control over how we react to what has happened. Holocaust survivors who had nothing else had this control, and many used it to triumph over adversity we can't possibly imagine.
If you are in a position of wildly fighting the idea of an MS life, that's okay. If you would rather not know than know, that's okay too. From kicking and screaming to calm acceptance and ability to make the most of it is 'a long and winding road.' Wherever you are on it, we are okay with you.
Stand strong.
ess
You know, I never really planned anything out, other than to find artistic opportunities. I've always wanted to be an artist, and when I started making leather masks, it was a real opportunity for me to create something that people would want to buy. Wow!
Looking back, it seems like I must have had MS for a long time - probably before 1997, maybe even further back, like age 12 or so.
So when I was diagnosed, some things became more important, and some less. I had thought about having a kid, but now that I can't rely on being healthy, it has less appeal. I've started some things I figured should be done now, because if I wait till later, I may not be able to do it.
But oddly enough, I haven't had much depression about the diagnosis. Maybe I'm one of those weird ones who ends up being cheerful for no reason. It's just one of those things that life deals you - like having bad eyesight or a wonky ticker.
> Mon-Fri 8:30am - 4pm ...... ahhhhhhhhh some normality back in my life and out of that crazy environment...
Sharon, I had better results with a 3:30 pm - 12 am shift. When I started working noon to 8:00, I started noticing more fatigue. Best of luck to you!
Looking back, it seems like I must have had MS for a long time - probably before 1997, maybe even further back, like age 12 or so.
So when I was diagnosed, some things became more important, and some less. I had thought about having a kid, but now that I can't rely on being healthy, it has less appeal. I've started some things I figured should be done now, because if I wait till later, I may not be able to do it.
But oddly enough, I haven't had much depression about the diagnosis. Maybe I'm one of those weird ones who ends up being cheerful for no reason. It's just one of those things that life deals you - like having bad eyesight or a wonky ticker.
> Mon-Fri 8:30am - 4pm ...... ahhhhhhhhh some normality back in my life and out of that crazy environment...
Sharon, I had better results with a 3:30 pm - 12 am shift. When I started working noon to 8:00, I started noticing more fatigue. Best of luck to you!
My life story up to 2007 reads like a bad Russian Novel. No professional understands how I came out of my early years with out being an Ax Murderer. I just kept dusting myself off and keeping going. In 2007 the last of my crazy, mean family was gone and I had a nice inheritance. I was no longer doing 50 hours or more of physical work a week. Then bam my Doctor finds something wrong on my yearly physical exam.
For two years tests and Doctors all saying MS no one confirming it. Finally the diagnosis last April. This week they confirmed what I knew it is PPMS not RRMS and I have had it for years not what I wanted confirmed.
I am writing a book and was thinking what make a good story? I think through history journeys make the best stories. It is not the destination but what happens along the way. Mostly the people we meet. Few people's lives go as planned. This new part of my journey has put amazing people in my life. Doctors who go out of there way to help. My PCP e-mailed me with some ideas yesterday. My Psychiatrist promised me the day I was diagnosed last April no matter what he is there for me.
My friend Marybeth did not plan for her husband, who she had a great life with, to die from Multiple Myeloma. My friend Phil did not plan to get hit by a car while training for a triatholon and break his neck and be in a wheel chair.
"True contentment comes from playing the hand you are dealt".
They asked people who live to be 100 what is the most important thing. Flexibility, being able to adjust to what life throws at you. Control is an illusion. I marvel at big weather events because no matter how sophisticated we are mother nature can stop us in our tracks. Our bodies are the same. I marvel at how well the body does work and how we can take it for granted.
Humor is great. I am fond of black humor. Far side stuff.
Alex
For two years tests and Doctors all saying MS no one confirming it. Finally the diagnosis last April. This week they confirmed what I knew it is PPMS not RRMS and I have had it for years not what I wanted confirmed.
I am writing a book and was thinking what make a good story? I think through history journeys make the best stories. It is not the destination but what happens along the way. Mostly the people we meet. Few people's lives go as planned. This new part of my journey has put amazing people in my life. Doctors who go out of there way to help. My PCP e-mailed me with some ideas yesterday. My Psychiatrist promised me the day I was diagnosed last April no matter what he is there for me.
My friend Marybeth did not plan for her husband, who she had a great life with, to die from Multiple Myeloma. My friend Phil did not plan to get hit by a car while training for a triatholon and break his neck and be in a wheel chair.
"True contentment comes from playing the hand you are dealt".
They asked people who live to be 100 what is the most important thing. Flexibility, being able to adjust to what life throws at you. Control is an illusion. I marvel at big weather events because no matter how sophisticated we are mother nature can stop us in our tracks. Our bodies are the same. I marvel at how well the body does work and how we can take it for granted.
Humor is great. I am fond of black humor. Far side stuff.
Alex
Your post really resonates with me right now. I am still undx'd - with the "possible MS" hanging over me right now. I have one lesion in the corpus collosum & a variety of symptoms....so we watch & see what happens.
I saw a neuro psychologist a few times this last December and she said exactly what you already know - being diagnosed with any chronic or serious illness usually means that most will go through the phases of grieving. We are "losing" an idea of ourselves, our life and what we expected our lives to be like, as well as whatever physical manifestation the illness takes.
I have days where I think to myself - "I just wish that my life didn't revolve around the PT, acupuncture, medical massage, doctor appts, symptoms....etc....maybe if I stopped doing these things I could "forget" that I have these problems"...Sadly, I think if I stopped these treatments, I would feel worse & then there would be no way to "forget"...so the cycle continues.
I have learned to take each day as it comes. If I feel good, I take advantage of it. If I don't feel good, I do what I have to do to take care of myself.
For me, it is the only way I can cope with this.
Hugs of support,
Chrisy
I saw a neuro psychologist a few times this last December and she said exactly what you already know - being diagnosed with any chronic or serious illness usually means that most will go through the phases of grieving. We are "losing" an idea of ourselves, our life and what we expected our lives to be like, as well as whatever physical manifestation the illness takes.
I have days where I think to myself - "I just wish that my life didn't revolve around the PT, acupuncture, medical massage, doctor appts, symptoms....etc....maybe if I stopped doing these things I could "forget" that I have these problems"...Sadly, I think if I stopped these treatments, I would feel worse & then there would be no way to "forget"...so the cycle continues.
I have learned to take each day as it comes. If I feel good, I take advantage of it. If I don't feel good, I do what I have to do to take care of myself.
For me, it is the only way I can cope with this.
Hugs of support,
Chrisy
COMMUNITY LEADER
I actually found after acceptance was 'getting busy', busy learning everything i could about the dx (my acceptance was having disabled children, long story), the good, bad, plain old loopy la la stuff, any information even remotely connected that i could get my hands on.
IMHO acceptance means 'to be at peace with the dx' so if i look at it that way, i'm still stuck in the denial faze because i will never be able to accept i do not have the ability and tenacity to make a difference. That isn't to say i'm delusional in the idea i could change the dx, not at all but i do believe that a dx does not predict a future that is not yet written and that means anything IS and CAN be possible if you dont give in and give up.
To me acceptance is two fold, accepting what you can and fighting to change what you cant (accept). I find my self, less concerned about the name of my beasty at this moment in time though i would still like to know, its just less of a priority. I'm more focused on changing the status of today, tomorrow and next week. I work on changing my unwritten future, i may get knocked about a bit sometimes but i still try to see the improvements no matter how minuscule they may be.
I walk in limbo land, i dont want to be there any longer than i already have, i never expected to be there but i am. The not knowing is a negativity in its self, easier isnt the right word but i think for me it would be better to know. As it is I feel like i'm fighting this beasty with a twig, slowly chipping away at it but what i really would like is a nuclear weapon so that i can annihilate the slippery little sucker!!
Cheers........JJ
PS Humor is one of the best medicines in my book :-)
IMHO acceptance means 'to be at peace with the dx' so if i look at it that way, i'm still stuck in the denial faze because i will never be able to accept i do not have the ability and tenacity to make a difference. That isn't to say i'm delusional in the idea i could change the dx, not at all but i do believe that a dx does not predict a future that is not yet written and that means anything IS and CAN be possible if you dont give in and give up.
To me acceptance is two fold, accepting what you can and fighting to change what you cant (accept). I find my self, less concerned about the name of my beasty at this moment in time though i would still like to know, its just less of a priority. I'm more focused on changing the status of today, tomorrow and next week. I work on changing my unwritten future, i may get knocked about a bit sometimes but i still try to see the improvements no matter how minuscule they may be.
I walk in limbo land, i dont want to be there any longer than i already have, i never expected to be there but i am. The not knowing is a negativity in its self, easier isnt the right word but i think for me it would be better to know. As it is I feel like i'm fighting this beasty with a twig, slowly chipping away at it but what i really would like is a nuclear weapon so that i can annihilate the slippery little sucker!!
Cheers........JJ
PS Humor is one of the best medicines in my book :-)
Sharon - yip, you belong here. We're having a party over on another thread - spasming up our Wazoo's and zaping in the Va-J-J's. You are welcome to join us!
Q
Q
I was never diagnosed, but I do remember the shock and fear when I first heard "MS." Thinking, will I be walking a year from now? Should we remodel the bathroom to accommodate a wheelchair? I gotta get a job with long-term disability insurance. Etc.
I was one of the lucky ones--my symptoms of whatever-it-is have remained mild. I would way rather spend 10 years undiagnosed (as I have) than have what you have. Whether it's better to be in limboland than diagnosed ALL DEPENDS on how bad one's symptoms are.
I think we all go through various scenarios about what might happen in our life, like you did, regarding our health and other things, and most people have things turn out a lot differently, for better or worse. "Catastrophizing" is not good, but neither is being too surprised when bad stuff happens, because bad stuff happens to most people eventually.
I don't know how your MS and your life will turn out, but one thing is for sure: good things will happen to you, too. They always do.
Best of luck and welcome to the forum!
Nancy
I was one of the lucky ones--my symptoms of whatever-it-is have remained mild. I would way rather spend 10 years undiagnosed (as I have) than have what you have. Whether it's better to be in limboland than diagnosed ALL DEPENDS on how bad one's symptoms are.
I think we all go through various scenarios about what might happen in our life, like you did, regarding our health and other things, and most people have things turn out a lot differently, for better or worse. "Catastrophizing" is not good, but neither is being too surprised when bad stuff happens, because bad stuff happens to most people eventually.
I don't know how your MS and your life will turn out, but one thing is for sure: good things will happen to you, too. They always do.
Best of luck and welcome to the forum!
Nancy
Well you have an excuse but I am now past my bewitching hour! Congrats on the move - I hope it does you well. - L
Oh Lulu I have a logical explination for the late night (online)
I start work at 4:30pm and finish at 12am.
The good news is: That I after I was diagnosed I applied for a transfer out of a&e dept and finally got news that I start my new post on monday..... I
In the paeds dept. Mon-Fri 8:30am - 4pm ...... ahhhhhhhhh some normality back in my life and out of that crazy environment...
mmmmmm paeds..... at 29 I'm not the most broody person in the world but looking forward to normal working hours, less chance of infection, less stress and a regular routine. Lets hope there are plently of quiet children there everyday....... ???????
I start work at 4:30pm and finish at 12am.
The good news is: That I after I was diagnosed I applied for a transfer out of a&e dept and finally got news that I start my new post on monday..... I
In the paeds dept. Mon-Fri 8:30am - 4pm ...... ahhhhhhhhh some normality back in my life and out of that crazy environment...
mmmmmm paeds..... at 29 I'm not the most broody person in the world but looking forward to normal working hours, less chance of infection, less stress and a regular routine. Lets hope there are plently of quiet children there everyday....... ???????
now I am going to channel your mother, and ask why you are up so late? The days that I can be up into the middle of the night are long gone. If I make it past 10 I'm having a wild night!
rest easy - we're all in this together.
L
rest easy - we're all in this together.
L
My new favorite for today is:
" Life is one big unknown - MS is just part of that" (Co. LuLu)
An new one for my list and I love it!
Thank you.
Sharon
" Life is one big unknown - MS is just part of that" (Co. LuLu)
An new one for my list and I love it!
Thank you.
Sharon
Sharon,
Can I be your coauthor on this piece? You nailed it girl.
I often think I am very glad I didn't know I had MS years ago - which I probably did. I didn't even pay attention to the issues I had way back then. I just figured it was (fill in whatever cause you want) and it always went away. I NEVER thought of it being MS until I was 54 years old.
I've had all the thoughts you are experiencing plus some more, and I am so glad I didn't live with those thoughts for the past 20 or so years.
My personal favorite is the doctors are wrong and I don't have MS ... I don't have anything wrong with me at all in this fantasy.
Counseling may be beneficial in making peace with this. Life is one big unknown - MS is just a part of that. Counseling make help you to put your MS into perspective so you can get on with living.
And you are young enough that I believe there will be a cure for this in your lifetime, so hang in there. It is going to get better.
lots of hugs,
Lulu
Can I be your coauthor on this piece? You nailed it girl.
I often think I am very glad I didn't know I had MS years ago - which I probably did. I didn't even pay attention to the issues I had way back then. I just figured it was (fill in whatever cause you want) and it always went away. I NEVER thought of it being MS until I was 54 years old.
I've had all the thoughts you are experiencing plus some more, and I am so glad I didn't live with those thoughts for the past 20 or so years.
My personal favorite is the doctors are wrong and I don't have MS ... I don't have anything wrong with me at all in this fantasy.
Counseling may be beneficial in making peace with this. Life is one big unknown - MS is just a part of that. Counseling make help you to put your MS into perspective so you can get on with living.
And you are young enough that I believe there will be a cure for this in your lifetime, so hang in there. It is going to get better.
lots of hugs,
Lulu
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