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Old 01-21-2010, 05:49 PM   #1
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Manda87 HB User
Coping with an MS diagnosis

Hi. I am a medical student and we're currently learning about MS. We're learning the disease process and the effects on the body, but I'm also interested in learning what this is like from the patient's point of view. We're taught the science behind it, but I hope to also learn the human aspect of it. I have an aunt and an uncle who have both been diagnosed with MS, so I have spoken to them about their point of view, but I was wondering if anyone would be willing to talk about how they dealt with the initial diagnosis and how they continue to cope with it today. If you have/had depression associated with it, what was the best way you found to deal with it?

With this information I hope to be able to better understand what my future patients may be going through.

I know that this is a very serious and personal subject, and if you do not feel inclined to share, I will understand completely. Thank you for your time.

God bless,

Manda87

 
Old 01-21-2010, 08:54 PM   #2
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Re: Coping with an MS diagnosis

I think some of it has to do with the generation or year of diagnosis. I was diagnosed in 1982 and had had symptoms since 1977. At that time there was little to offer. I was fortunate to have a forward thinking neurologist who had me focus on the positive and to avoid stress.

Depression and anxiety often hit hard when the MSer is subjected to more and more tests without a hint of "what's up". I have a fine neurologist at the University of Kansas Medical Center. She treats me forthright and has never pushed meds on me. I have much respect for her. Many doctors bring stress upon MSers due to their condescending or perceived condescending attitude towards their patient- bedside manners.

I last attended a three day pity party in October 1982. Life is too short and God has blessed me abundantly to the point that pity-party invites are always refused. Even at my worst, I found plenty to thank God for providing me.

MS does not change who we are as a person. Most of the changes I experienced were based on others who judged my MS and combined it with their fears of MS. Too many live in fear of MS because they do not know MS. Once the MS diagnosis is made, you really learn who your friends are.

The loss of friendships can be detrimental to many which leads to depression. I cling to my God because I know I will never be abandoned. Faith keeps me positive. I refuse to allow MS to change who I am or to crash my life.
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Old 01-22-2010, 05:04 AM   #3
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Re: Coping with an MS diagnosis

Manda, although I dont disagree with Jayhawk in any way, my story proves his point about generation of being diagnosed. Im in my early 40s. I was 39 when I was dx...4 years ago.

My diagnosis hasnt changed me in a single way which is negative; however it has taught me to PUSH myself to the limits, as you never know what tomororw will bring. IM currently doing my dotorate. I work 60+ hours a week in a very demanding job-I raise 3 stepchildren and have a mostly happy marriage.

There are challenges with MS. Especially when someone decides to take on as much as I do. I have to say no to friends and get togethers, in order to conserve my strength for the more important thing in my life. I have to juggle my weekends so that I get all the housework/ laundry/ grocery shopping and planning done, so that I can give 100% to my job and school during the week. And, there are nights when I say no to my husband too. I make dinner, clean up the kitchen, go upstairs to my office to do paperwork/ school work and then head to bed....which doesnt always make for an easy marriage, especially when as he says "this is self inflicted".

The biggest challenge for me with MS is not knowing. The unknown is a very scary place to be...whether its being in limbo land during the diagnosis (That didnt happen to me, i was dx extremely quickly) or whether its accepting the disease and still wondering where youll be in 5, 10 or 20 years with disability. In this day and age, where they tell us that Interferons are supposed to keep progression at bay (and I take one of them) I often wonder if it will continue to keep me as healthy as I currently am....my last 4 years of Interferon Therapy have been successful, but how long will that last? A big unknown~!

Hope that gives you some insight into my world with MS. Im a huge believer in education is the key to figuring this out, so thanks for caring!
Nikki
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Old 01-24-2010, 05:21 PM   #4
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Re: Coping with an MS diagnosis

I had myletis in 1998 and the gambet of tests with no conclusive diagnosis. I recovered and life went on. Fast forward to 2009, when i got hit with optical neurotis. My brain MRI was clean but my spine was a mess. I tested out of Devics disease, so MS it is.

I was happy to be diagnosed. After 3 days solumetrol and prenesone folllow up, i felt better than i had in 5 years. I didn't know how bad i felt until i felt better, i was just on a slow decline.

I always had problems after the myelitis if i let myself get to tired or run down. I called my "early warning system." I can push but sometimes i pay for it. Stress is a terrible aggravator, but everyone handles and tolerates stress differently.

You asked specifically about depression, and that i am fighting now. Part the disease part the treatments. The diagnosis didn't upset me, but sharing it with my family and close friends was difficult. Everyone has the same question, "what does this mean?" And when there is no answer, that can be upsetting.

I dealt with my diagnosis by revealing it on my time line. I am had to mentally absorb and work through it first before i was ready to share. I did my research when i felt strong and if i started to feel upset, i pulled back and resumed another time. For example, I was diagnosed in Nov and now almost Feb i feel ready to envolve myself with online message boards and support. I consider my MS and all that goes along with it, just another thing that i have to manage.

If u have any specific questions i will be happy to answer.

Cheers!
K

Last edited by kaiileigh; 01-24-2010 at 05:22 PM.

 
Old 01-27-2010, 08:21 PM   #5
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Re: Coping with an MS diagnosis

Thank you all so much for replying! I would like to be able to say that I understand how hard it is to cope with such a diagnosis and how hard it would be to share with people, but, as you well know, no one can truly understand unless they've lived it. This is the best way I know how.

As I said before, I really want to understand diagnoses like MS from the patient point of view, and I thank you for helping me in that process. My goal is to be the best doctor that I know how to be, and I really feel as though I cannot do that properly without being more patient-centered. Has there ever been a time in which you wanted more out of your doctor? I know this is a hard thing to deal with, as you all have illustrated, but do you feel like you can turn to your doctor, or would you rather speak to friends and family? Or, would you rather not speak at all? My aunt feels as though she would "burden" her family with more information than is necessary, and therefore has chosen to be more introverted about her disease. It makes me wonder how common that is, and if, perhaps, health care providers should be more aware. Do you have any thoughts on this?

I am truly amazed by each of you, and cannot fully express my gratitude for sharing your story, and awe of the courage you display daily.

 
Old 01-27-2010, 08:47 PM   #6
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Re: Coping with an MS diagnosis

Quote:
Originally Posted by Manda87 View Post
Has there ever been a time in which you wanted more out of your doctor? I know this is a hard thing to deal with, as you all have illustrated, but do you feel like you can turn to your doctor, or would you rather speak to friends and family? Or, would you rather not speak at all? My aunt feels as though she would "burden" her family with more information than is necessary, and therefore has chosen to be more introverted about her disease. It makes me wonder how common that is, and if, perhaps, health care providers should be more aware. Do you have any thoughts on this?
My current neurologist is great for me. My first neurologist was a guiding light for my journey. I know that my current neurologist has always been there for me.

For day-to-day MS things, friends and family are better for discussing MS, but, for me, I agree with your aunt. My MS is a daily burden and I do not want to have to discuss it daily nor be reminded of my burden- besides, I am too busy!

I think that health care providers and those around us need to allow us our space. When I see someone in a wheelchair, I treat them as a person and not as a wheelchair trapped victim. I do not think that they want to have to discuss their disability on a daily basis.

Having someone who has empathy is much nicer than someone who has pity on me but tries to show empathy in order to hide their pity. (This is my opinion.) True empathy can be felt and it touches ones heart, at least it touches my heart. If you can show understanding, kindness, and respect for your patients while also being open to learning new things and not dismissing your patient's concerns, you can be an excellent doctor.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 01-29-2010, 07:22 AM   #7
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Re: Coping with an MS diagnosis

I'd be happy to say what happened to me.
Firstly MS was confirmed to me when I was lying under a towel on a bed in Consulatants room, not the most empowering of situations. I was horrified and immediately set out to find help. Joined Action for research and id a diet high in polyunsaturates.This was way back in 1981, since then I have had numerouse attacks but am fine now thanks to Homoeopathy.

 
Old 01-29-2010, 11:22 AM   #8
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Re: Coping with an MS diagnosis

Welcome Lizbong. I am glad to see another long-term MSer remaining positive!!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 02-14-2010, 03:48 PM   #9
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Re: Coping with an MS diagnosis

Manda - I think the mere fact that as part of your medical training you are looking for input on the patient's perspective speaks volumes of the kind of doctor you will become.

After more then a year of odd medical issues with no explanation and a neurotologist telling me he would figure out why this happened to me when my autopsy was done, I was finally diagnosed with MS a week ago Monday.

In my wildest dreams I never would have expected that being told that I had a serious disease would be a huge relief, but it was. Now that I know what I'm dealing with, I can figure out how to treat my symptoms and focus on issues that are more productive.

My experience with the doctors that I have seen has been mixed. As you know with MS, there are so many variances that no one could point and say "ah ha....its MS" until we went through all the motions. But after more then a year of dealing with medical experts in a variety of fields, it was an APRN that was my advocate and she was the one who fought for me to get the answers and tests that I needed. There has been a lot of times that I have felt that I have been fighting an upstream battle. The doctors either didn't hear, didn't want to hear or didn't take the time to put the pieces together despite my urging them to listen to my symptoms and make the connection. If it weren't for my APRN, I would probably still be in the land of the undiagnosed.

It sounds to me like you have a bright future in the medical field and your future patients will be lucky to have a physician who is making the effort to see the world through their eyes. Kudos to you.

 
Old 02-14-2010, 06:20 PM   #10
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Re: Coping with an MS diagnosis

Hi Mandy,
Thanks for coming here and asking us to help you understand the impact of the diagnosis.

I'm into my third year of nightly injections, a treatment I was supposed to be grateful for and yet resent. As people here know, I never looked for a diagnosis - I was very busy raising children and caring for elderly parents with devastating diseases of their own ... Parkinson's and Alzheimer's ... diseases I knew up close and personal and was prepared to accept when I too was an elder with such. But I believed that would be later, after I'd finished my career and retired safely with a pension, as my dad had done.

I was content to just treat the come and go symptoms as needed - I didn't need or want the "big answer" that others expected me to seek out ... and my PCP then was as complacent as I, for she knew better than I that there was no cure for autoimmune/central nervous system disease. Only when she referred me to a neurologist for assessment of my painful "sleeping feet" did I begin the frightening journey of diagnostic testing. Ruling out everything else involved great risk in some tests - consent forms that gave permission to do tests that could leave me paralyzed or comatose, and leave my family in dire straits ... and yet I complied, though unwillingly, and resentfully. And all else that they searched for was not there, and the tests that were so risky were so unnecessary.

My symptoms existed in my thirties, forties, and fifties ... I wasn't diagnosed until late fifties. The nightly injections began, and intensified my resentment. My symptoms look exactly like my dad's did when he was my age ... there were no MRIs then to search for lesions that would label a patient with MS ... he lived with these symptoms successfully and productively well into his eighties, and only in his last few years needed our assistance. I expect to do the same, but am burdened along the way with this diagnosis and these injections.

Mandy, the tone of this response is very unlike me - I'm usually a patient, accepting person. But this has brought me to a depressed and anxious, fearful level, and I now take both depression and anxiety medication.

I will finish my career, as my dad did. The injections may or may not affect the progression - they make minimal promises, and have no effects on the come and go symptoms that I have known for all of my adult life.

That's what the diagnostic process has brought to my life, and to my family's. I regret knowing.

Thanks for listening, and for caring, and for reflecting on our responses.
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Old 02-17-2010, 04:29 PM   #11
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Ginny8675309 HB User
Re: Coping with an MS diagnosis

Quote:
Originally Posted by Manda87 View Post
Hi. I am a medical student and we're currently learning about MS. We're learning the disease process and the effects on the body, but I'm also interested in learning what this is like from the patient's point of view. We're taught the science behind it, but I hope to also learn the human aspect of it. I have an aunt and an uncle who have both been diagnosed with MS, so I have spoken to them about their point of view, but I was wondering if anyone would be willing to talk about how they dealt with the initial diagnosis and how they continue to cope with it today. If you have/had depression associated with it, what was the best way you found to deal with it?

With this information I hope to be able to better understand what my future patients may be going through.

I know that this is a very serious and personal subject, and if you do not feel inclined to share, I will understand completely. Thank you for your time.

God bless,

Manda87
Hi, Manda
my name is Ginny I just found out i have ms last wed. I drove home in shock, shakey and grabbed my cell phone and told my husband. I cried and met him at home and on thursday he called my family from his office and told them he couldn't handle this and that i should move home. He called me on friday from his office and told me it was over and i should move home with my daughter and be near a loving supportive family. So im basically devistated and scared and waiting for the next annoying or painful symptom and crying nonstop because i love my husband and he is so selfish that he left me. So i hope this helps you understand a little more about this because its not only the disease its your life around you.
Ginny8675309

Last edited by Ginny8675309; 02-17-2010 at 04:31 PM. Reason: forgot my name

 
Old 02-17-2010, 04:34 PM   #12
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Re: Coping with an MS diagnosis

Quote:
Originally Posted by Ginny8675309 View Post
Hi, Manda
my name is Ginny I just found out i have ms last wed. I drove home in shock, shakey and grabbed my cell phone and told my husband. I cried and met him at home and on thursday he called my family from his office and told them he couldn't handle this and that i should move home. He called me on friday from his office and told me it was over and i should move home with my daughter and be near a loving supportive family. So im basically devistated and scared and waiting for the next annoying or painful symptom and crying nonstop because i love my husband and he is so selfish that he left me. So i hope this helps you understand a little more about this because its not only the disease its your life around you.
Ginny8675309
Ginny - I am SO sorry to hear this What a horrible reaction from the one person who is supposed to be there to support you no matter what. I can't even imagine what you must be going through. I've just been diagnosed a little over a week and if I was facing a divorce at the same time, I don't know what I would do. BIG hugs to you from a total stranger.

You WILL get through this and I hope that your family will be more supportive then it sounds your husband has been.

 
Old 02-17-2010, 04:46 PM   #13
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Re: Coping with an MS diagnosis

I def need a hug so thanks. Im trying to stop crying. Did you cry? unfortunately i dont know anyone here, because weve only lived here since october of 2009 and i have to wait to move home until my daughter gets out of school. It is really scary not knowing what is next hoping i can continue to drive her to and from school by myself. I haven't seen or heard from him since friday. I hope you are coping with this well. I hear the treatments are good. I am supposed to decide which interferon treatment i want to take. He said the more shots the less side effects and the least shots possible liver damage. I don't know what i should do.

 
Old 02-17-2010, 04:53 PM   #14
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Re: Coping with an MS diagnosis

Quote:
Originally Posted by Ginny8675309 View Post
I def need a hug so thanks. Im trying to stop crying. Did you cry? unfortunately i dont know anyone here, because weve only lived here since october of 2009 and i have to wait to move home until my daughter gets out of school. It is really scary not knowing what is next hoping i can continue to drive her to and from school by myself. I haven't seen or heard from him since friday. I hope you are coping with this well. I hear the treatments are good. I am supposed to decide which interferon treatment i want to take. He said the more shots the less side effects and the least shots possible liver damage. I don't know what i should do.
Aside from the jerk of a husband, we are in the same boat! I cried a few times, but honestly, I've been urging doctors to diagnose me with this for about a year now. Deep down I knew this is what I had so for me, it was more of a relief to finally have an explanation so I can move forward.

It is scary and like you, I am worried about so many things that I just can't predict or control. I have a total loss of my vestibular system (the inner ear function) so I already can't drive at night due to the strain on my central nervous system.

I am honestly in shock that someone whom you are married to would abandon you like that. It is so sad and unfortunate that someone could be so callous and selfish when you need him most. How old is your daughter? Young kids bounce back quickly and it might be better for you both to move back to your family sooner then later so you have some emotional support.

I too am trying to decide which treatment to go with. My appointment is on Monday to make the decision known. I don't envy you. If there is anything I can do to help talk you through the decisions, please feel free to reach out anytime.

 
Old 02-17-2010, 05:07 PM   #15
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Re: Coping with an MS diagnosis

Quote:
Originally Posted by Wilc516 View Post
Aside from the jerk of a husband, we are in the same boat! I cried a few times, but honestly, I've been urging doctors to diagnose me with this for about a year now. Deep down I knew this is what I had so for me, it was more of a relief to finally have an explanation so I can move forward.

It is scary and like you, I am worried about so many things that I just can't predict or control. I have a total loss of my vestibular system (the inner ear function) so I already can't drive at night due to the strain on my central nervous system.

I am honestly in shock that someone whom you are married to would abandon you like that. It is so sad and unfortunate that someone could be so callous and selfish when you need him most. How old is your daughter? Young kids bounce back quickly and it might be better for you both to move back to your family sooner then later so you have some emotional support.

I too am trying to decide which treatment to go with. My appointment is on Monday to make the decision known. I don't envy you. If there is anything I can do to help talk you through the decisions, please feel free to reach out anytime.
Your awesome you are the first person to help me. I don't like needles at all!!!! So i want to go for the 1 shot a week aproach but it has more side effects. I have now a neurogenic bladder so i pee all over myself and on friday they are doin surgery to inject collagen into my urethra to bulk it up and see if it helps. crazy huh? But, great idea. I am sure god has a plan for us. After things get better or sooner i will start writing music. I think this a great country song! So heres to you my new friend.

 
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