Aa
general rant and self pity, probalby not worth reading as it is not very uplifting
Just need to vent a little bit and people were so kind last time I posted on this forum. I have no diagnosed MS, and as far as I know am not being investigated for it, but it seemed you understood here what I was going through. So I just need to get some stuff out of my system. I recently had a brain and spine scan for pain, weakness, visual and balance problems. I contacted the imaging department today and they said it would be at least a month until my results came in, so I've booked to see the neurologist in about 6 weeks. I don't know what I want, for something to be found or not. My problems are so tiny compared to what people here have to deal with, yet for me my whole world has collapsed. From being a fit young woman I now struggle to walk and have been diagnosed with a limping gait. I don't know why that upsets me so much, it is like the outward sign of all that has changed in me. My biggest pleasures in life, walking and execrcising, are now ordeals and often reduce me to tears. I am treated like a drug addict by many doctors because of the large amounts of narcotics and benzodiazepams I take. I got thrown out of my last job because of how I've become, irritable and often rude to people. I don't know whether it is the pain that has made me like this or the medications, but I have driven away all my friends and family. They know I spend a lot of time going to hospital appointments and having tests, and they treat me like I am doing it for the attention. There are some doctors who do this too. I hate and despise the medical profession, and recently have become heavily involved in this website, trying to help others, wanting them to be empowered so they are able to get the right treatment from their doctors. I have medical training and that freaks many of my doctors out, especially when I am asking for drugs. All in all am being left feeling like the lowest slimeball alive. Since these problems with my health really kicked in a few years back I have lost everything, my friends, family, work, reputation, self respect, all my pleasures in life. So what happens when the test results come in? If all is normal my life goes on deteriorating unchecked. To become bitter, disabled, and dismissed. If there is a problem what then? I trust no doctor to help me and cannot see myself putting my life in the hands of a profession I despise. I'm thinking that with such a long wait for the results perhaps there is nothing wrong. I have read some of your stories and know the hell you have gone through and the fights you have had to make. But I don't have fight left in me. I'm entirely and daily pumped with drugs which I hate but need to conrol my pain, and periodically have to humiliate myself in front of one doctor or another to get more. I have been suicidal when I am without my drugs, the pain is so bad. My kidneys are slowly packing up with the relentless diet of pills and more pills. I cannot move. These days I am spending a lot of time on this website, gaining some reward from helping where I can, but maybe I should back away from other people's problems. Maybe my advice is not good. I am just in limbo waiting for the MRI results, and am pretty sure I am waiting for nothing. For an answer to suddenly appear would be too out of character for how things have been for me to date. Wish I could forget I had this damn test, but it is playing on my mind, and I have another 6 weeks of this. Whatever I find out then will not be good news. I think this maybe needs to be the last test I have. I've had enough of looking for answers. Either this shows the problem or I'm on my own with this. Thanks for letting me rant.
I just wanted to offer you lots and lots of hugs (((((((((((((((((((((hugs))))))))))))))))))))))))))))).
You are safe and among friends here and are free to vent and share all that you want to.
You are safe and among friends here and are free to vent and share all that you want to.
Hi there and I am glad that you are feeling better today. Please know that I don't believe that you upset any of us with your rant but we were able to empathize with you because I believe that most of us have either been where you were yesterday...or darn close to it at different times.
I don't understand how a physiotherapist can butt in on an appointment as important as yours was with your orthopedic specialist and I hope that the ortho is going to put a stop to moves such as that immediately! How ludicrous is that!
I am glad to hear that you won't have to wait until the end of June for the MRI results...I personally think that the worst part of this malady we are dealing with is the waiting...waiting for appointments, waiting for tests, waiting for results but that seems to be all a part of having a chronic illness and I take solace in the fact that everyone else is dealing with the same waiting problems as I!
Honey...please know that we are here for you if you need to rant ok? I was very worried about you last night and I even spoke to our "den mother" last night asking if she could read your post because I felt like I was in over my head...however, I buckled down and wrote what I felt would help and I truly hope that what all of us wrote helped! You are welcome to send me a personal message at any time as well...I am here until May 20th and then going on vacation for 10 days but until this time, I am here for you ok?
Lots and Lots of Hugs,
Rena
I don't understand how a physiotherapist can butt in on an appointment as important as yours was with your orthopedic specialist and I hope that the ortho is going to put a stop to moves such as that immediately! How ludicrous is that!
I am glad to hear that you won't have to wait until the end of June for the MRI results...I personally think that the worst part of this malady we are dealing with is the waiting...waiting for appointments, waiting for tests, waiting for results but that seems to be all a part of having a chronic illness and I take solace in the fact that everyone else is dealing with the same waiting problems as I!
Honey...please know that we are here for you if you need to rant ok? I was very worried about you last night and I even spoke to our "den mother" last night asking if she could read your post because I felt like I was in over my head...however, I buckled down and wrote what I felt would help and I truly hope that what all of us wrote helped! You are welcome to send me a personal message at any time as well...I am here until May 20th and then going on vacation for 10 days but until this time, I am here for you ok?
Lots and Lots of Hugs,
Rena
Am a bit overwhelmed by the number of responses. My deepest thanks for all the support. I feel somewhat alarmed that some people have been so upset by my post. It was such a personal rant but I now see it raised raw feelings in people. When you are distressed you do not think of how others take your venting your feelings. But the anonymity of this site is for me my protector, I can say what I'm feeling, although I still feel bad it hurts some of you.
Had what was supposed to be an appointment with my orthopedic specialist today, and wanted to ask him about my results. Somehow though a physiotherapist picked up my notes and decided they would run my appointment. I ended up with a lecture on more exercises etc. etc. and I kept explaining how excercise was at best not helping and at worst weakening me. Also this physio had no access to my MRI report and yet told me not to worry about it. I felt patronised and also annoyed they had muscled in on another doctor's appointment and were now telling me not to worry when they didn't even know what MRI I had had or why! Afterwerwards I phoned the secretary of the neurologist and she said that he would contact imaging to get them to do the report and then they could send it to me. Basically I don't have to wait until the end of June. I will of course share with you the findings. Nobody has even mentioned MS as a possibility, but it seems the neurologist is looking for something. Apparently I was tested on one of the newer MRI machines so hopefully the information will be of good quality. For those of you who have been diagnosed and are spending your energy supporting others here I admire you absolutely. I did not realise there were others on this site who had come over without diagnoses, and are under the same if not more stress as me. I think how in a few years my world has narrowed, and also as so many have said here, somehow you always find some resources to cope. For whoever it was who asked, I live in the UK, and am under the slow moving, shambolic, but fortunately free National Health Service. We do not have the same rights to demand results within a time frame as other countries, but I have been so far lucky in being seen so quickly and hope my neurologist will keep his secretary's word and chase up the report.
Like everyone here I have bad days, and it is the support of my dreams when suddenly a load of people who do not know me offer such complete understanding and connection. It is like walking into a house of strangers and suddenly being made to feel one of the family. I can't promise I won't rant again, but right now you've cheered me up enough I don't feel the need. Thank you and I wish all the help on you that you have given me.
Had what was supposed to be an appointment with my orthopedic specialist today, and wanted to ask him about my results. Somehow though a physiotherapist picked up my notes and decided they would run my appointment. I ended up with a lecture on more exercises etc. etc. and I kept explaining how excercise was at best not helping and at worst weakening me. Also this physio had no access to my MRI report and yet told me not to worry about it. I felt patronised and also annoyed they had muscled in on another doctor's appointment and were now telling me not to worry when they didn't even know what MRI I had had or why! Afterwerwards I phoned the secretary of the neurologist and she said that he would contact imaging to get them to do the report and then they could send it to me. Basically I don't have to wait until the end of June. I will of course share with you the findings. Nobody has even mentioned MS as a possibility, but it seems the neurologist is looking for something. Apparently I was tested on one of the newer MRI machines so hopefully the information will be of good quality. For those of you who have been diagnosed and are spending your energy supporting others here I admire you absolutely. I did not realise there were others on this site who had come over without diagnoses, and are under the same if not more stress as me. I think how in a few years my world has narrowed, and also as so many have said here, somehow you always find some resources to cope. For whoever it was who asked, I live in the UK, and am under the slow moving, shambolic, but fortunately free National Health Service. We do not have the same rights to demand results within a time frame as other countries, but I have been so far lucky in being seen so quickly and hope my neurologist will keep his secretary's word and chase up the report.
Like everyone here I have bad days, and it is the support of my dreams when suddenly a load of people who do not know me offer such complete understanding and connection. It is like walking into a house of strangers and suddenly being made to feel one of the family. I can't promise I won't rant again, but right now you've cheered me up enough I don't feel the need. Thank you and I wish all the help on you that you have given me.
I was in tears last night after reading your post, so much despair and pain, and on top of that having to wait so long for an MRI result and having lost the support of your family and friends.
I'm sure many on this site can relate to the agony of waiting for the next test result or the next doctor's appointment and not getting closer to an answer.
I too used to be an athletic person and used to enjoy the outdoors and was looking forward to the next tropical vacation. Everything came crashing down 4 months ago.
I'm still hoping that with the negative spinal tap these lesions in my brain don't mean anything and somehow they will go away.
One part of me is still hoping the other part knows I probably have MS.
In my moment of despair my husband always tells me to take one day at a time and that we will get through this and adjust to the new reality, I also find comfort in God, I know He cares more than anybody could.
It isn't easy and life is not easy, we have lost our identity, I know I'm not the person, the wife or the mother I used to be. I have been consume with this MS.
I know you are in great despair but you have to keep going ONE day at a time and ask God to give you peace. God cares and He will help you if you ask. What also help me is to think that it could always be much worse or it could have been my child and look at what happen a few days ago with the cyclone in Asia so many people dead and in despair.
I will pray for you wishforchange, I will pray that you find answers and that God brings you peace and comfort.
Sara
I'm sure many on this site can relate to the agony of waiting for the next test result or the next doctor's appointment and not getting closer to an answer.
I too used to be an athletic person and used to enjoy the outdoors and was looking forward to the next tropical vacation. Everything came crashing down 4 months ago.
I'm still hoping that with the negative spinal tap these lesions in my brain don't mean anything and somehow they will go away.
One part of me is still hoping the other part knows I probably have MS.
In my moment of despair my husband always tells me to take one day at a time and that we will get through this and adjust to the new reality, I also find comfort in God, I know He cares more than anybody could.
It isn't easy and life is not easy, we have lost our identity, I know I'm not the person, the wife or the mother I used to be. I have been consume with this MS.
I know you are in great despair but you have to keep going ONE day at a time and ask God to give you peace. God cares and He will help you if you ask. What also help me is to think that it could always be much worse or it could have been my child and look at what happen a few days ago with the cyclone in Asia so many people dead and in despair.
I will pray for you wishforchange, I will pray that you find answers and that God brings you peace and comfort.
Sara
As others hav said and I repeat, call the Imaging place and request a copy. By law you have a right to it within 3 days of int's completion, which is almost instantly now. You might have trouble interpeting it, but that's where all these wonderful forum folks come in. Please take our prayers to heart, and let them ease your burdens...((((hugs))))) and prayers, Maggie
Rant all you want--you aren't hurting anyone! I'm so sorry you are having to wait that long for your MRI results. Is there any way you can contact them and have the doctor call with the results? Plus, you can't be living in pain like that for that much longer--that's absurd. Sheeeshhh!
Whatever your MRI results show, know that we're here for you--however it may turn out.
I know how it feels to lose confidence in the medical field . . . I'm hoping that this neuro turns out to be the one who puts the pieces of the puzzle together for you, but he doesn't appear to be considerate of you in regards to your having to wait this long. Maybe the radiologist was all wrong about the length of time it will take. Even he wasn't, I'd call the neurologist until you get some kind of information.
I know what it's like to lose friends because of how you're feeling. You need some support, sweetie. We can certainly be here for you, but is there anyone you can see to help you through this? If you have MS (or other chronic illness), you may be depressed. I would also talk with the doctor about this (on the phone). Many people with chronic illness (like myself), need an antidepressant and may need counseling. Living in that kind of pain for that long would do me in. I'm really surprised how you've held things together and have managed to help others on the MedHelp forum when you're experiencing that kind of pain. Now you need some people to help YOU!!!! That's what this forum is for. Now it's YOUR time!!!
Take care, sweetie.
Deb
Whatever your MRI results show, know that we're here for you--however it may turn out.
I know how it feels to lose confidence in the medical field . . . I'm hoping that this neuro turns out to be the one who puts the pieces of the puzzle together for you, but he doesn't appear to be considerate of you in regards to your having to wait this long. Maybe the radiologist was all wrong about the length of time it will take. Even he wasn't, I'd call the neurologist until you get some kind of information.
I know what it's like to lose friends because of how you're feeling. You need some support, sweetie. We can certainly be here for you, but is there anyone you can see to help you through this? If you have MS (or other chronic illness), you may be depressed. I would also talk with the doctor about this (on the phone). Many people with chronic illness (like myself), need an antidepressant and may need counseling. Living in that kind of pain for that long would do me in. I'm really surprised how you've held things together and have managed to help others on the MedHelp forum when you're experiencing that kind of pain. Now you need some people to help YOU!!!! That's what this forum is for. Now it's YOUR time!!!
Take care, sweetie.
Deb
Honey...please know that we are here for you for that very reason! You can come on here and rant and rave all you want and we will try to help you the best we can.
You have probably heard time and again how this one and that one has been in your position but I am going to be the broken record and repeat that I have been there and I HAVE a diagnosis! he he
Seriously though, I personally think that you need to take a break from the worry about a diagnosis and find something that brings a smile to your face. I went through a fairly serious period when I had no friends, no family, no job, no name for my pain and felt constantly that everyone thought I was faking BUT I am fortunate in that my hubby and my Mom have stood by me but it wasn't automatic either. You need to find someone in your life that you can trust and that you love unconditionally and you need to sit them down and explain how alone you feel and you need to reach out for help honey! You will be pleasantly surprised that there really are people in your life that want to help...BUT THEY DON'T KNOW HOW??? Sometimes people just don't know how to deal with illness and the easiest way to avoid it is if they ignore and they hope it will go away. WE know that won't happen but sometimes people need to be led by the hand down the path of your life to really see what is happening in it. Granted there are going to be some people that are going to back off from you and the whole idea of you being sick but there is someone out there that will help you...you have to reach out...you have to make that first step to ask for help...face it honey, it's not fair for you to expect them to read your mind is it!? tee hee I tried that and it just didn't work very well.
I wish I could find a post that I made months ago after I had a "falling out" with my "friends". I don't remember all of what happened but I had gone to a party without my hubby and all our friends were there and I was treated like I was invisible. I did the usual of coming home and bawling my eyes out and then I got it together and asked all the people that were at that party to please meet me at a restaurant for coffee. When they arrived I proceeded to explain why I had asked them there, what MS is, how MS is affecting me, what my limitations are, how they made me feel and by the time I was done there was not a dry eye in the place! Now that was not my intention because i didn't want pity! I wanted understanding and respect and grant it some of them came across really honestly at first but it wasn't long before I learned who my real friends were. This might be something that you might consider doing my dear because like I said before...they can't read your mind and a lot of times we just find it easier to wallow in feeling sorry for ourselves and taking on the nobody likes me attitude but it really isn't worth it. You are worthy and you are a beautiful person that is expressive and caring and smart and in a lot of pain...you are going to have to make the first move though honey and I want you to know that we are all behind you here and if I could be there to help you I would.
Please keep in touch and let me know how you are making out ok? You can personal message me if you like...I have a good ear as do all here and I want to help you as do all here ok?
Lots and lots and lots of Hugs,
Rena
You have probably heard time and again how this one and that one has been in your position but I am going to be the broken record and repeat that I have been there and I HAVE a diagnosis! he he
Seriously though, I personally think that you need to take a break from the worry about a diagnosis and find something that brings a smile to your face. I went through a fairly serious period when I had no friends, no family, no job, no name for my pain and felt constantly that everyone thought I was faking BUT I am fortunate in that my hubby and my Mom have stood by me but it wasn't automatic either. You need to find someone in your life that you can trust and that you love unconditionally and you need to sit them down and explain how alone you feel and you need to reach out for help honey! You will be pleasantly surprised that there really are people in your life that want to help...BUT THEY DON'T KNOW HOW??? Sometimes people just don't know how to deal with illness and the easiest way to avoid it is if they ignore and they hope it will go away. WE know that won't happen but sometimes people need to be led by the hand down the path of your life to really see what is happening in it. Granted there are going to be some people that are going to back off from you and the whole idea of you being sick but there is someone out there that will help you...you have to reach out...you have to make that first step to ask for help...face it honey, it's not fair for you to expect them to read your mind is it!? tee hee I tried that and it just didn't work very well.
I wish I could find a post that I made months ago after I had a "falling out" with my "friends". I don't remember all of what happened but I had gone to a party without my hubby and all our friends were there and I was treated like I was invisible. I did the usual of coming home and bawling my eyes out and then I got it together and asked all the people that were at that party to please meet me at a restaurant for coffee. When they arrived I proceeded to explain why I had asked them there, what MS is, how MS is affecting me, what my limitations are, how they made me feel and by the time I was done there was not a dry eye in the place! Now that was not my intention because i didn't want pity! I wanted understanding and respect and grant it some of them came across really honestly at first but it wasn't long before I learned who my real friends were. This might be something that you might consider doing my dear because like I said before...they can't read your mind and a lot of times we just find it easier to wallow in feeling sorry for ourselves and taking on the nobody likes me attitude but it really isn't worth it. You are worthy and you are a beautiful person that is expressive and caring and smart and in a lot of pain...you are going to have to make the first move though honey and I want you to know that we are all behind you here and if I could be there to help you I would.
Please keep in touch and let me know how you are making out ok? You can personal message me if you like...I have a good ear as do all here and I want to help you as do all here ok?
Lots and lots and lots of Hugs,
Rena
Hi! I'm a "newbie" here but I read your post and felt your pain.
Please know that I'm here praying for you.
Also, I want both you and others to know that what makes this "place" so special is people like you who care and reach out to us, the newcomers who are lost and need answers and simply want to feel connected to SOMEONE who cares. So, please, don't stop posting, just take a break if you absolutely feel like you need one.
~Sunnytoday~
Please know that I'm here praying for you.
Also, I want both you and others to know that what makes this "place" so special is people like you who care and reach out to us, the newcomers who are lost and need answers and simply want to feel connected to SOMEONE who cares. So, please, don't stop posting, just take a break if you absolutely feel like you need one.
~Sunnytoday~
I'm so sorry you're going through all of this uncertainty and frustration, hun.
First of all, I don't understand why it is taking so long to get the report of your MRIs. My facility had them done within hours and I was able to pick up a copy of the report the next day and before hearing from my neuro. I don't think I could wait the 6 weeks to get the results.
Second, I can totally understand how you are frustrated with the tests and appointments. Since my journey for answers started over 16 months ago, I've gone through so many tests and appts too. I've found some things that are wrong, but the biggest "?" is still unanswered ~ whether I have MS or not.
I'm so sick and tired of having at least one appointment each week. This week, I have 2, plus 2 appointments for my kids. I just wish for one week where I didn't have to step foot in a doctor's office or lab. My husband is frustrated at all of the $$ spent and still no answers. He thinks all I have to do is exercise and everything will go away. He's totally clueless.
In spite of all of the testing/MRIs looking for a MS diagnosis over the last 16 months, I'm still in the same spot as I was last January. My repeat MRI is stable ~ no change. I asked my neuro "where does this leave me now?". He said, "The same place you were before". I'm so tired of this uncertainty and the amount of time I've spent is nothing compared to many who are in limbo.
If your MRI results come back with no answers, maybe you can just back away from the tests for awhile. I know you're in awful pain, and I'm sorry you are going through this, but can you just take some time to pull away a bit? I'm not asking you to give up your search, but just take a "breather".
As far as offering advice on this website, coming from someone who has no medical knowledge, I really do appreciate hearing opinions from others who do have that knowledge and/or expertise. If you are getting a reward for helping others, please don't stop.
I have a friend who has MS. He is a bit older than me (I'm 45) and got his Dx 3 years ago. He has a more uncommon progressive-remitting type of MS. He uses a wheelchair to get around most of the time, but has recently graduated to a cane.
He was recently going through an enormous amount of pain and depression. He told me that he had thought about ending his life, which I didn't know at the time. He now has a pump for pain meds and his doctor switched some of his medication. He's doing remarkably well. I'm mentioning this as perhaps your pain and meds could be managed or switched for something that's more effective for you?
You are in my thoughts and prayers. I do hope you can get some answers and relief quickly.
Take care and ((hugs)), Pat :)
First of all, I don't understand why it is taking so long to get the report of your MRIs. My facility had them done within hours and I was able to pick up a copy of the report the next day and before hearing from my neuro. I don't think I could wait the 6 weeks to get the results.
Second, I can totally understand how you are frustrated with the tests and appointments. Since my journey for answers started over 16 months ago, I've gone through so many tests and appts too. I've found some things that are wrong, but the biggest "?" is still unanswered ~ whether I have MS or not.
I'm so sick and tired of having at least one appointment each week. This week, I have 2, plus 2 appointments for my kids. I just wish for one week where I didn't have to step foot in a doctor's office or lab. My husband is frustrated at all of the $$ spent and still no answers. He thinks all I have to do is exercise and everything will go away. He's totally clueless.
In spite of all of the testing/MRIs looking for a MS diagnosis over the last 16 months, I'm still in the same spot as I was last January. My repeat MRI is stable ~ no change. I asked my neuro "where does this leave me now?". He said, "The same place you were before". I'm so tired of this uncertainty and the amount of time I've spent is nothing compared to many who are in limbo.
If your MRI results come back with no answers, maybe you can just back away from the tests for awhile. I know you're in awful pain, and I'm sorry you are going through this, but can you just take some time to pull away a bit? I'm not asking you to give up your search, but just take a "breather".
As far as offering advice on this website, coming from someone who has no medical knowledge, I really do appreciate hearing opinions from others who do have that knowledge and/or expertise. If you are getting a reward for helping others, please don't stop.
I have a friend who has MS. He is a bit older than me (I'm 45) and got his Dx 3 years ago. He has a more uncommon progressive-remitting type of MS. He uses a wheelchair to get around most of the time, but has recently graduated to a cane.
He was recently going through an enormous amount of pain and depression. He told me that he had thought about ending his life, which I didn't know at the time. He now has a pump for pain meds and his doctor switched some of his medication. He's doing remarkably well. I'm mentioning this as perhaps your pain and meds could be managed or switched for something that's more effective for you?
You are in my thoughts and prayers. I do hope you can get some answers and relief quickly.
Take care and ((hugs)), Pat :)
I thank you from the bottom of my heart for that and I certainly hope that 'wishforchange' sees this....
Wow, I really needed to cry like this and also to believe again.
THANK YOU!!
Tammy
Wow, I really needed to cry like this and also to believe again.
THANK YOU!!
Tammy
Please read this entire post, whether you believe it or not it is the Truth. The Lord God Almighty knew you before He created you in your mother's womb. He knows the number of your days and He has a reason for all of them. We have been given this disease, or if not diagnosed yet, these symptoms for a reason. It could be just to draw us closer to Him, or it could be to show us what things in life we are taking for granted and what areas we have neglected. Only He knows why you are going through what you are going through. I know if I had to face a single day going through this without knowing that He will not give me more than I can handle, I would give up. But every day I wake up and praise His name for all my blessings, even this disease. He will work His perfect work through this if you give Him the chance. You are a child of God if you believe it or not. He gave His only son to experience pain we could never imagine and to die a disgraceful death for us. He loves you more than you could ever comprehend. Give your life to Him and allow Him to carry all your worries for you, and you will experience a peace that surpasses all understanding, yes even peace with this disease. If you ever have a need feel free to email me @ ***@****. As a child of God I love you and I pray that you will never give in to this disease, or whatever your final diagnosis may be.
I am so sorry that you are going through such a difficult time. I know how frustrating it is to have your body turn against you without getting answers you need from the 'professionals'....
Why do you have to wait so long for you MRI results? Where do you live, if you don't mind me asking?
I really don't know what else to say, but I will pray for you that you may find some answers and more importantly some relief from so much pain.
Please hang here with us and vent all you need to. It does help to get it out of your system.
Once again, my heart goes out to you for all you're going through.
Take Care,
Tammy
Why do you have to wait so long for you MRI results? Where do you live, if you don't mind me asking?
I really don't know what else to say, but I will pray for you that you may find some answers and more importantly some relief from so much pain.
Please hang here with us and vent all you need to. It does help to get it out of your system.
Once again, my heart goes out to you for all you're going through.
Take Care,
Tammy
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