I am so new to this and I feel that my feelings are so raw. I don't have a diagnosis yet. I know that everyone thought I was crazy until my emg was abnormal. This is going to sound weird but I am scared that I might not have MS and It might be somthing worse like ALS.
I am so blessed that I have a husband that helps me and now has to do everything laundry, grocery etc. and he does it with smile. He is in the military so he is emotionally detached form this situation. Yesterday was the first time he asked me to explain to him the differnece betwwen ALS and MS.
I worry about my children. I want to live long enough to see them safely into the world.
I feel sadness and I feel sorry for myself then I tell my self STOP IT!! you have RIGHT NOW don't waste it. I have to talk to myself a lot.
I so get no longer sweating the small stuff. I was a perfectionist when it came to the house. We had dear friends that came into town yesterday...the house was picked up but there were dust buffalo every where. I didn't care because it was about the friends and not the buffalo.
I too view the world differently.. everyday I make myself say ONE thing I CAN do versus the 5-10 ways my body failed me that day. Today I can walk without pain.
I am so grateful for this forum even though I am new i have come to appreciate it. I am surrounded by people in my life that love me but I felt very alone until I found you guys.
Thanks to all of you that have listened and take the time to read and respond. I value every word and thought you have to offer.
Keeping this on top!
This is a GREAT idea!
Once I posted here, and shared all that was going on w/me, I haven't left. This will be another thread for the memory books, something all should do, if haven't done so.
I cherish all my responses, and the friends, and knowledge and experience that came along with them.
Emotions, wow, great topic. It does require some soul searching to find truly what you are feeling compared to what you try to show the world.
I have felt like I am on a roller coaster for the most part for the last 2 years. I knew that something was wrong with me but the docs aren't fast on believing or trying to find out. So how has that affected me?
I go through bouts of anger, depression and complete frustration. I want to live like I did before and feel as if I am being robbed of that and don't know why. Fear is also a big factor in all this. Not only the fear of now knowing, but as I discovered last night, the fear of actually getting an answer.
Without realizing it, I have found out after much soul searching over my fear of this next appointment that I had started to identify myself as a limbo lander. Now I may have answers forthcoming and it scares me to death because then I will have to start anew with understanding and dealing with the outcome. Whether a good or bad diagnosis, what I have come to know as my life these last couple of years, will once again change.
I love my family dearly but at times I too find it to be difficult to deal with. I try to do what I can and when I can but sometimes they make me feel like a small child who needs to be protected. I get angry then because if I'm having a good day, I want to contribute and they won't let me. I also realize how fortunate I am to have such a caring family.
My DH on the otherhand is the opposite. When I am having a really bad go, he will not help at all. I get the feeling that he thinks if he makes me push, then I will be better. So that causes friction and anger with me because then I feel that it is another thing I have to deal with. The I feel guilty as I realize how hard this must be for him to watch me go through all this and him not being able to do anything about it. It has brought us closer in some aspects and in others it has made things very difficult, if that makes any sense.
I get depressed over how this has affected me and my family. I'm sad that my symptoms have caused this to become a life altering thing. I do though now let the small stuff go and realize how precious life is. I take each day as it comes now and if it's a bad day, I try to deal with it the best I can. If it is a good day well yahoo!!
Being able to come here has my life line through all of this. I have shared more emotion here than I think I have done in my whole life. Thanks to you wonderful people, I find that what I feel is not unusual and that it is okay to be down, hurt, angry, scared and frustrated. Where I thought I was going crazy, I find from you all that I am alright.
I am looking at this now as more of a learning experience. The vast array of emotions has taught me a lot and I am not saying that I will not still feel these from time to time, but now I know that I need to look deeper in me as to the true reason for my feelings.
Thanks for this post Heather. Again you show us all how caring and insightful you are. This is an important part of what we all go through.
I am undx and due to financial problems and no health insurance, have not had any tests. I fight depression everyday because I miss the person I used to be. I can trace my down hill trend back at least 10 years maybe more.
This year has been extremely difficult and even though I have a close and very loving family, they do not accept that something is terribly wrong. I have always been their rock and the one to fix things when they needed fixing. My family doesn't understand that I'm not that person anymore, even though I do still try. I think they are ignoring my problems because they love me too much to accept that something could be wrong.
It hurts me deeply when one of my family expects me to do something that is impossible for me now, and I see that look of disgust or aggravation on their faces.
When I am having a bad day or in extreme pain I just keep my mouth shut and endure it without complaint. Except to you guys or my buddy Samantha (UK2). I can just no longer handle the looks that tell me that I just could not be in this much pain. I am sure some of you can identify with this.
There are days when I can tell that my husband realizes something is wrong and he tries to be understanding. He loves me, but he is just so used to me being strong and able to handle everything, the person I have become is not someone he recognizes.
My husband and I are residential home builders and we have worked side by side for 11 years. I have done everything from framing, landscaping, decorating, to the final cleaning on our homes. I have been slowing down for the past 5 years, but this year I didn't do anything, I just wasn't physically able.
Decisions were always made by both of us, but now I have so many days that I can't even think, this too has become impossible. I am, or was a very creative person. I could picture in my mind what the finished home was going to look like and proceeded with the building and decorating with that objective in mind. I can't do that anymore because it is though my creative mind has closed shop.
This breaks my heart, because all my life I have been a hard worker and considered myself to have a bright and creative nature. It feels as though I only have a small part left of what was once an intelligent and successful person. I really miss her.
I have days when I make myself a promise that "today is going to be a good day no matter what", but by lunch time I am back to the point of just giving up.
I love to read and I am having so much trouble with my eyesight that I get really afraid of what I would do if I lost it. I guess I just live in a state of fear everyday of what might go wrong next. This forum is a lifeline and if I can't see, then I would be cut off from all of you, what would happen to me then?
I want so badly to find a dx, but right now it is just not possible. I think that when I know for sure what is causing my problems it may help me to cope better.
I just want all of you to know that I love all of you and even though I don't post much anymore, I am still here and trying to keep up with all of you. This forum and the friends I have made here keep me going.
I have always been a stubborn person and I intend to keep that part of me no matter what. I do not believe in giving in or giving up. My body, mind and eyes might be declaring war on me, but I still have a heart and soul that knows I am strong and will win this battle like all battles that have come before.
What a FANTASTIC post...that's the way to go girl...get all those feelings out in the open. Re-read your own post and read it often.
You will find something different you didn't know about yourself and your emotions, each and every time you read it.
Thank you SO MUCH for sharing all of this with us. This is exactly what I was hoping for, when I asked for people to voice their emotions. It I believe, will give us all something to discuss with each other and hopefully help each other through.
We are with you babygirl...every step of the way. ALWAYS!!!
Wow, what a question. I have been diagnosised for 20 yrs at age 28. I am certain that I have had symptoms since I was a teenager. My life has taken many turns in 20 yrs. Plans I made at 20 have been changed, goals have been modified. Thru it all I have tried to keep a positive attitude.
I focus on doing things that have nothing to do with my MD. I sing in two groups. I do the same music, most of the movement but have to sit on a stool to perform. Both of these groups use me on the stool as part of the performance. I sit center stage, front row due to the part I sing. Being center stage on a stool makes me stand out but being a performer, I can deal with it. I must deal with it to fit into a society where most people are still able bodied. It gives me a great feeling of accomplishment.
I have accepted my MS as a part of me, but not the whole of me. Yes, I get depressed at times. Sometimes I just need a good cry on my husband's shoulder. By the way, I just got married on New Year's Eve, 2005 and is a second marraige for both of us. Before we were married, I was in a sharp decline. I did three doses of Novantrone and I was able to stand for the entire wedding. My family didn't think I could and there was a chair handy if I needed it. But I was determined to stand up with my husband as we said our vows. The memories are priceless.
I decided from the beginning to not hide my MS from anyone. I have interviewed for jobs and have gotten them even after disclosing the MS. All my family and friends knew from the beginning what I was dealing with and decided they would be there to support me in any way needed. I have found this to be an inspiration to some people.
Nothing get me more angry than for someone to tell me I cannot do something simply because I have MS. I demand to be the one to make that decision. And I love proving them wrong. And I am human enough to admit when I truly can't do something I want.
Life with MS can mean many things. It is up to you to decide how much control you are willing to give it. Even after 20 yrs, I am still learning.
Good luck to all.
I am just blown away by the honesty and compassion of each and every one of you that has posted thus far. You are making an old lady weep, but it's good tears. It helps me to understand more about all of you and hopefully strengthen the bond between all of us.
Thank you for laying it all out on the line....for trusting us enough to share your inner most thoughts and emotions. This is what I had hoped would happen.
God Bless all of you,
I am SO touched by all of you....WOW!
What a great question. The problem is that today I will probably answer it totally different than I would have last week. Right now I'm having some sort of bad flare (I hate that word) or something like that.
Today, I'm depressed, I'm in total disgust of what my body can or can't do, I seem to yell at everything my family does because none of it is how I would do it.
My husband is being way to nice. He is trying to help in ways that's very unusual for him and for some strange reason it makes me mad. I want to scream at the top of my lungs words that I would never say in my daily life. I want to go to bed, cover my head, and scream at anyone who tries to talk to me.
Last week, I would have told all of you that dealing with MS has changed my life in alot of ways but it has not changed me as a person. I'm still a happy woman who loves her family and this is just a silly disease that I refuse to allow to take over my life.
There are of course days that I'm sad, I call them my pity parties. I will feel sorry for myself, and pray alot for God to give me the strength to be a good Mother, wife and friend.
Then there are times that I know my family cannot possibly understand the pain I live with every day. I can't do the things I used to, I don't have the relationship with my husband that I at one time thought nothing could come in between. I felt like our sex life would be perfect forever. I never imagined that our love or our life would change.
Then the realization that every thing has changed. I haven't slept with my husband for 3 years now. I wonder what he must feel. I wonder if and how does he still love me. He rarely tells me that he loves me. We used to never go to sleep without saying the words. I can't remember the last time was that we sat down and really talked. I don't mean about a movie that's on, or the grandchildren, I mean really talk.
You know I could go on forever about my emotions and feelings of what MS has done to me, but somewhere you have to stop and ask yourself, was all of this caused from the MS? I don't know. I may never know. All I do know is my life has changed in the last 4 years so much that I never would have imagined it to be this way. I guess my biggest emotion is the feeling of despair. How else would you describe it?
One thing I want all of you to know is that had I not found this wonderful new family I really think I would have lost my mind. No matter how bad it is or how good it is ya'll are always here for me. This, I trule thank each and every one of you for. God Bless you All.
This is where I stop. If I don't do it now then I might just talk all day. lol Trust me I wont do that to ya'll.
I'll be praying,
I am having a terrible time with my new diagnosis of "growth hormone deficiency." I know I am deficient. This was proven to me in black and white with test results given by a very thorough endocrinologist I respect a lot.
My neurologist has theorized that some time ago, I had some sort of infection in my brain that so stressed out my endocrine system, it produced the deficiency. It also produced the symptoms I suffer of vertigo, nystagmus, weakness, diplopia and periodic paralysis in my legs. (I also have Babinski's sign)
I am having a hard time moving forward with this diagnosis. I am developing weakness again, and had a very hard time making it to church this morning. I am cinsidering buying a cane. People look at the way I walk, and it doesn't really bother me, but it does bother me that I can't walk well. Or stand during worship when everyone else is standing.
My endo said that he didn't have any other patients that had periodic paralysis with the GH deficiency, and the Babinski sign was very unusual. So, I worry that I don't really have my answer. Not that I DON'T have the hormone deficiency; I know I do. I just wonder if I have something more.
I've not really been tested for MS, except for MRIs which came out normal. I worry that perhaps I actuaaly may have MS, and I'm not doing anything to stop the progression. I know it can insidiously do damage even when there are no symptoms present. I worry that could be happening to me and no one is doing anything to check or stop it.
I also worry that I am obsessed with this diagnostic process. Why can't I let it go? I have two fine doctors who have spent a lot of time and energy figuring things out, and they came up with a reasonable diagnosis and treatment. Am I ever going to be satisfied with testing and answers? I worry that I'm just chasing an MS diagnosis or I won't be happy. Who would be happy with that?
I worry, too, that I won't make it up the stairs today. My legs are weak and tired and sore. I don't want to go to work this week. I feel like pulling the covers over my head and camping out till this all passes.
Feel well, all~
I have to say that my emotions are also like a roller coaster. Some days are really hard, others seem almost normal. My boyfriend has been wonderful, although at first he did not quite understand what I was going through. He now attends every doctors visit and puts his 2 cents in when he feels the need.
Today has been a good day. It is Sunday, so I have had 2 whole days of rest. The work week takes a lot out of me, even though my job is cushy.
I get really angry at myself for getting all excited about going to the doctors, thinking maybe today will be the day I will find out what is going on. I then end up so dissappointed. I want to throw things so hard!!! There was one point where I just wanted to get away from everyone due to my Dr. telling me that the symptoms sound like someone who had been abused or something and my symptoms are manifesting and it is like I am crazy!!!! Yes he acually said that... I gave him the blankest stare. That was the hardest day for me. What was even worse was that my boyfriend was with me! So after the appointment he was even questioning my symptoms!!! AAAAGGGGHHHHH
That was 3 months ago, and I have a new neurologist. Thank God!
Somedays, I feel like crying all day and I don't know why!!! Tears are on the verge, and the littlest thing will make them fall. I get to feeling sorry for myself. I feel sorry for my boyfriend, my son. shoot I even feel sorry for my cat because I forgot to brush her.
Then other days I can laugh at myself. Sort of like today. We went grocery shopping, and I forgot so many things!!! I even have a list, and my eyes look right over things!!!! Maddening!!! It was so crowded in the store, that my mind couldn't keep up, so I even forgot to give the cashier my coupons!!! If it had been a bad day, I would have ended up crying, but today I just shrugged it off and laughed!
Whew...this emotional stuff is very interesting when you start writing it down!! I don't just have a rollercoaster, I have one the goes backwards, and does loops!!!
Your Idea is wonderful. I have read everyone's post and I feel so at home here :) My new family too
Hugs and prayers to everyone!!!!
One more thing,
My boyfriend tells me that if it is MS, that just makes him love me more....
I'm pretty void. It's a combination of fear, being stunned at the prospect of having MS, and the fact that I'm part Swedish so my mom is extremely reserved, as am I.
I'm also stressed. I stress the stressing. If something goes amiss I react greater than I would normally, especially if I'm having a flare.
I'm more sensitive. If I spill my grape juice, instead of pouring salt on the stain to absorb it right away... I'll stand there and cry about it, I'm so upset. Meanwhile the stain has time to set and then I cry more about that.
My boyfriend and kitty are taking care of me. Boyfriend pours the salt on the grape juice and the kitty licks my tears up. It tickles.
HEATHER, YOU ARE SUCH AN AMAZING WOMEN THIS A GREAT TOPIC.
WELL HERE IT GOES,MY EMOTIONS OF DEALING WITH MS,IS MOSTLY THROUGH HUMOR BUT IN ALL REALITY I HAVE DAYS THAT HONK ME OFF AS I FEEL THAT MY CHILDREN HAVE BEEN ROBBED OF THEIR MOTHER,THE THINGS I USED TO BE ABLE TO DO I CAN'T.
BUT IN RETROSPRECT THEY GAVE ME A MOTHERS RING FOR CHRISTMAS ALL 4 OF THEIR BIRTHSTONES AND ON THE BAND GOING TO THEIR BIRTHSTONES IS THEIR NAMES AND ON THE INSIDE OF THE RING THEY HAD INGRAVED "YOUR OUR INSPIRATION"
I'M SCARED,DEALING WITH BILATERIAL OPTICAL NEURITIS AT ONE TIME,STILL DEALING WITH THE VISUAL DISTORTION.
I'M HONKED OFF THAT MY LEGS DON'T WANNA SUPPORT ME,IT'S A REMINDER EVERYDAY OF THIS SINCE I WEAR THE LEG BRACES.
ITS ROBBING OF MY HEARING,GOING FOR HEARING AIDES.
I'M TIRED OF ALL THE MEDS,START MY BREAKFAST OFF WITH 6 PILLS,JUST TO FUNCTION.
I HAVE A LOVING FAMILY,MY MOTHER AND SISTERS,BUT THEY ALL SAY PUSH THROUGH IT,IGNORE IT,BUT I KNOW THEY'D DO ANYTHING FOR ME.BELEIVE IT OR NOT I CAN CALL MY STEP-MOTHER(WHO IS NOT ALWAYS THE NICEST--SHE HAS BATTLED CANCER TWICE) AND BLESS HER HEART SHE LETS ME VENT.
I'M SCARED WHAT MY FUTURE MAYBE,AS I KNOW MY DISEASE IS PROGRESSING AND THERES NO MEDS APPROVED TO HELP,IT MAKES ME ANGRY AS ALL GET OUT.
I DON'T DISCUSS TO MUCH WITH MY FAMILY AS I DON'T WANT TO BURDEN THEM.I WANT MY CHILDREN TO FOCUS ON THEIR ENDEVORS.
I FEEL THAT I GOTTA PUSH THROUGH MY SYMPTOMS AND HIDE THEM AS I GOTTA TAKE CARE OF MY 2 REMAINING CHILDREN AT HOME.
I HAVE LEARNED WITH MS ALL THINGS ARE POSSIBLE,EVEN WITH LIMITATIONS,IT HAS TURNED MY LIFE INTO A WHIRLWIND,BUT HAS MADE ME A STRONGER PERSON.
I FINALLY DID GO TO MY DR AND SAY HEY I NEED SOMETHING TO HELP ME WITH THE MOOD SWINGS AS I WASN'T COPYING WELL WITH EVERYTHING,I FELT BY ASKING I WAS BEING WEAK,AS I WAS RAISED JUST TO WORK AND PUSH THROUGH IT.IT WAS THE BEST THING I COULD OF DONE FOR MYSELF.
I HAVE LEARNED TO COPE,BUT WHEN ALONE I HAVE MY PITY PARTY FOR ONE ON OCCASIONS,DO I GREIVE FOR THE OLD ME HECK YEA,BUT I HAVE SLOWLY FOUND A NEW ME.
THIS PAST YEAR HAS BEEN HECTIC,THE DX,THE INTRUDER,THE 5 DAY HOSPITAL STAY,4 RELAPSES TREATED WITH SOLU-MEDROL INFUSIONS,MY DAUGHTER LEAVING FOR THE NAVY,A CAR ACCIDENT,THE DIAGNOSIS OF ARACHNOIDITIS AND HAVING TO HAVE ANOTHER BACK SURGERY.
BUT AS I LOOK BACK ON THE YEAR I'D HAVE TO SAY IT WAS H**L,BUT I SURVIVED,MANY WOULD OF GIVEN UP.
MY SON CAME TO ME AND TOLD ME HIS WRESTLING COACH REALLY LIKED ME,I LAUGHED AND TOLD MY SON I WAS TO OLD FOR HIM AND MY SON TOLD ME NO MOM,HE ADMIRES YOUR STRENGTH,YOUR WILL,HOW YOU GO THE FITNESS CENTER,MY WILLING TO GO OUT IN PUBLIC ON MY WORST DAYS.HE TOLD MY SON ,WHEN HE HAS A BAD DAY HE BUILDS OFF MY STRENGTHS AND REALIZES THINGS FOR HIM AREN'T THAT BAD.
I THINK WITH THE DX IT HAS CHANGED MY LIFE FOR THE BETTER,RENEWED MY FAITH AND STRENGTH IN THE LORD AND OTHERS.
ITS BEEN A ROUGH ROAD,THE FALLING,THE VISION,THE LOSS OF HEARING,MY LEGS NOT WORKING,BUT I'LL CONTINUE TO BE ME,TAKE EACH DAY AS THE GOD LORD GIVES THEM TO ME AND NOT TAKE ANYTHING FOR GRANTED.
OH YES,I'LL CONTINUE TO CLEAN GUTTERS,DRY WALL(MY WHOLE UPSTAIRS NEEDS GUTTED AND REDONE),I REFUSE TO LET THE MS AND AA GET ME.
I AM VERY BLESSED WITH HAVING YA ALL HERE,YOU HAVE BEEN VERY SUPPORTIVE AND MANY HAVE PUT UP WITH MY WARPED SENSE OF HUMOR.I THANK GOD EVERY DAY FOR YA ALL HERE.I HAVE GAINED A VERY WONDERFUL CYBER FAMILY AND WITHOUT YOUR LOVE AND SUPPORT I THINK I COULD OF GOTTEN VERY ANGRY WITH THE DX AND WENT INTO A DEEP DARK PLACE AND ALL OF YA HAVE KEPT ME FROM THERE.I CAN'T THANK YOU ALL ENOUGH.
I THANK GOD EVERY DAY IT WAS ME WITH THESE DX'S AND NOT MY CHILDREN NOR MY SIBILINGS.THE GOD LORD PUTS NO MORE ON US THEN WHAT WE CAN HANDLE.
I WILL CONTINUE TO FIGHT EACH SYMPTOM AS THEY OCCUR,I KNOW THAT I'M GONNA HAVE DAYS WHERE I'LL NEED A GOOD CRY.I HAVE LEARNED FROM MY CHILDREN THAT THEY HAVE NOT BEEN ROBBED OF THEIR MOTHER,BUT THAT I HAVE
MADE THEM STRONGER.
I PLAN ON STARTING COLLEGE IN APRIL FOR X-RAY TECH,I PLAN ON TAKING THE TEST TO GET MY REAL ESTATE APPRAISAL LICENSE.
I WILL HAVE BACK SURGERY IN JUNE,BUT THIS IS GONNA BE A POSITIVE YEAR.
THE ROUGHEST YEAR IS BEHIND ME,AND I CAN'T THANK YOU ALL FOR HELPING ME GET THROUGH IT.
I am not diagnosed yet, but have so many emotions and yes I am willing to share.
I feel like my family don't understand and dont want to care. I find myself yelling at them a lot for things that I would do but some days are just to weak to do. I want them to understand the pain and frustration that I am experiencing with this "probable MS" diagnosis. I know that they are so different but I also know that I am different now too then I was 2 years ago.
I can hardly walk up steps and I lay some nights just crying in pain. I think maybe I am crazy because no one wants to believe the symptoms that I experience and at the different times I experience them.
I feel lost somewhere with no reason to return. I love to go all the time but I fear what will happen if this is MS and if I cant drive anymore. My daughter graduates from high school next year and is very active in band and other things... I cant help but wonder will I be able to walk with her on that football field for her senior night. Will I be able to stand and cheer for a job well done when she walks across the stage as she completed another milestone in her life.
My son graduates from college. In 2 years will be marrying the love of his life will I be there?? Will I be able to hold my grandchildren when ever they come into the world??
I have changed so much emotionally and physically that it is scary for me. I dont like to have to be cared for... I am the tyoe of person who always cared for others. I was a hospice nurse for many years and hate that I can not be out in the community any more lately. Not because I dont want to be but because I cant.
Everyone because you all are so special to me I want to tell everyone a secret... Only my family knows about me... My husband and I adopted a young man who is now 26 and has cerebral palsy. I cared for him and lead him into the young man he is now.
The sad part of all this is now he is leading me down the path of trying to stay strong and be who he knows me as. He has become my inspiration just like he use to say I was his inspiration.
Some days I cant talk to my family because I know they dont know what I am feeling and dealing with and that is when I turn to this forum. I know I am still new here but I hope I can become old here really soon. I love you guys and thanks for such a great place to loose my emotions too.
Really good question, Heather. From reading all the great posts, it seems this topic is long overdue. We’re so focused on our physical health, and rightly so, that the emotional aspect is sometimes overlooked. I will admit that in the past, I way underestimated the emotional impact of being diagnosed with a chronic illness, until I experienced this personally. And I was trained as a social worker, for pete’s sake! Just goes to show…….you can empathize and still never really understand what someone is going through till you’ve been there yourself.
Like all of you, I have experienced a whirlwind of emotions since learning of my possible MS and again upon receiving my definitive diagnosis. Some of the more prevalent ones are:
I have had a couple of serious meltdowns, of the panicked, near hysterical variety. I am normally pretty reserved and calm; this was a very scary feeling to me.
After 4months, I’m still not sure that the full reality of this has sunk in. I believe this is going to take some time.
Of losing my physical abilities and my independence. Also I am very afraid that my double vision will never recover and that I will be stuck with this for good. I realize this is very possible and am trying to get my head around it.
That I have much less control than I perceived I did before being dx’ed.
This is a weird one. I know in my rational mind that I did nothing to bring this on, yet sometimes I feel ashamed about it. Thus far I have been somewhat quiet about my MS. I have told close friends but sworn them to secrecy. I have told only a couple of people at work. I don’t want my condition to be widely known. I don’t want people to feel sorry for me.
That things will never be the same. I am working on letting go of this.
That I took my good health for granted all those years. I also am letting go of this; it’s only going to rob me of happiness today.
I did not feel relief at the time of my dx; I had not been suffering for years like many others. However since learning a lot more about other neurological conditions, I now feel relief that it is not something worse.
Not an optimist by nature, I am surprised by the moments I am taken over by hopefulness. Hearing about how people go on and do well after dx is really helping me. Looking forward to starting treatment is also giving me hope; as is all of the research on MS that is in the works. Even if there is no cure in my lifetime, it does seem likely that treatments will improve.
I am starting to believe that I will be able to handle this.
Never have I felt more love in my life than in these past few months.
I hate that this is happening to me. So I am amazed that I feel any gratitude at a time like this, but I honestly do. Where do I start? Fantastic doctors, compassionate and kind nurses, prompt and thorough medical attention, free MS meds and universal health care in general, a supportive employer, great benefits, job security, financial security, the loyalty and support of my friends, and most of all, my husband, who has stepped up to the plate in a big way. He is doing everything for me, with compassion and without complaint, and finds ways to make me laugh even on my darkest days.
This really is a roller coaster; some days I feel all of the above, and then some.
I for one do NOT believe that everything happens for a reason. I do however believe in finding meaning in what does happen, which is different. I believe MS shoots randomly, and like all of you, I happened to get caught in the cross-fire. I honestly don’t think “why me?” Perhaps a better question is, “Why anyone?” No one deserves for this to happen to them, but there it is. The best I can do is to try to stay calm; try not to worry too much about what the future will bring and focus on today; not take for granted what I do have; and try not to mourn too long for what I’ve lost.
Thanks to all of you for the information, support and hope that you give me.
I am a limbolander. There is something not right. I don't know what it is and my doctors don't know / haven't worked it out yet. My close friends (who know) make jokes about imaginary illnesses.
They ridicule me for "making my doctor think there is really something wrong". (my endo is the one still with and supportive). They think I am obsessed with my health. So nowadays I don't even mention it to my closest friends. I just live with it.
I even feel reluctant to see my drs (don't have a good neuro yet)... because I know they are scratching their heads and have no answers and find me a 'difficult' patient. My endo still keeps muttering about MS. Anyway, what am I worrying about, I am functional.
I haven't told my family anything. I can't tell them anything. Anyway, they are all too far away to do anything. So no diagnosis and I can't tell them anything. In a way, that's good. I don't want them to worry.
I guess denial that anything is wrong is the strongest emotion I am trying to maintain. I want to believe there is nothing wrong. I am not disabled! I mainly have sensory symptoms, with a little visual stuff thrown in. That can be caused by psychosomatic causes. Or maybe just my thyroid playing up (though I know that's not the case).
Then there are despair days. I can't tell anyone what's going on anymore because they all think its in my head. This makes me so sad. I want it to just be in my head because I want it to go away. And if it's just in my head, then it can stay there. I feel this so strongly that I am crying as I type this.
I have so many goals in life and this limbo land thing makes it harder. harder because I don't know what's going to happen. harder because my body is acting strange, and harder cause I get really tired.... but then maybe that's just cause i'm busy.
I get so angry at myself. I should not be like this. I should be able to ignore everything. I should be strong. I should be achieving all my goals and performing brilliantly at work and other things I choose to do. I should not be seeking answers for my imaginary condition.
Oh dear. Sorry. Verbal diarrhoea. Gotta work now. Deadlines overdue.
What an interesting topic idea. Hope this isn't too long!
I am a limbo-land person. I've had symptoms for approx. eight years. At first I completely ignored the numbness and tingling in my feet, as it only occured when I was stressed out. Finally, it got so bad that I mentioned it at work and people were concerned.
When it started happening in my hands as well, and when I started getting lots of strange symptoms all at once I got concerned and saw the doctor.
Twice now I've gone through the whole workup only to find nothing. My doctor who I loved suggested it might be depression and put me on AD. The medicine has helped me feel much better, but my symptoms are still there, although they seem much better recently.
I started off feeling really strong emotionally. Even my doctor told me how well I was handling all the uncertainty. (First, probably MS, then maybe Lupus, then probable MS, then no MS, ...)
However, I've noticed that I started really obsessing about finding out what was wrong with me a year ago. It's so strange when you KNOW that your body isn't feeling/acting right. You KNOW that you aren't a neurotic, hypochondriac-type person, but a logical, pragmatic, intelligent person. Yet it seems like no one will believe you.
My husband has been great about it all. My Mom (who is a RN) has been great, but I think she thinks it's all a stress response. Perhaps it is, I'm open to all ideas and will be seeing a counselor soon to talk this through.
I don't want to have any disease! If this is depression, and if I've found out and can control it with medication, etc. I'm thrilled to do it and move on.
But these past six months or so have been very tough. I'll think that I have accepted that I might not ever know what's wrong with me and just move on, only to discover that I can't let it go. I'm scared that there might be something that can be done if only I knew what "it" was.
At first I was afraid to make any plans for the future. Now I am going on as if nothing ever happened. However, I worry still that this may impact our financial future. I guess I don't even know how to explain what I feel. I'm only glad that others here seem to understand! :)
Two hours ago I was at my doctor's office looking at films of my brain, the second MRI I have had since October. He was pointing out the white spots and how they have grown larger, blah blah blah, yada yada yada. I interupted him and asked point blank. "So, do you think it is MS?" and he said Yes.
So I am in shock. I don't know what to feel right now. I read these posts, and there are so many emotions represented that I have felt in these last couple of months. I especially relate to doublevision1's post.
Today, I feel DOUBT - maybe the doctor is wrong? A couple of months ago, after the first MRI, docs at OHSU said it did NOT look like MS.
I feel RIGHT - All along I've had a feeling in my gut that it was MS, and they just didn't have enough info yet.
I feel SCARED - For my self, for my family, for my business. For what the future might hold.
I feel PISSED OFF & full of SELF-PITY - If everything happens for a reason, why me? Although, I think that "finding meaning in what does happen" is a better path for me.
I feel CONFUSED - About the stacks of drug info I left the office with. The hilarious thing is that each set of drug information (there were 3 drugs) was packaged up in a tricked out gifty messenger bag like you'd pick up at a trade show. Told the doc l felt like they were saying "You've got MS, but here are some lovely parting gifts for you!" Do they think I'll pick the drug came with best free bag, or what?
Anyways ... It has been a couple of months since I posted here. At that point I was in Limbo land. Just being back on this board for a few minutes has given me some comfort, and the reminder that I am not alone with this new diagnosis.
My dx is currently "probable MS." My feelings are (a) sadness that I may not be hiking with my husband through our retirement years (if we get there), and (b) extreme relief that it's not something immediately life threatening of the "you have six months to live" variety that would take me out of the running to see my children grow up. I know other emotions will arise. I've had incidents of near pseudobulbar affect a few times in the last two weeks, involving sudden tears out of nowhere. I'm not very good at recognizing and naming my emotions (we have autism in our family and are all "unusual"), so if this seems overly rational, it's still sincere at this point in time. I find that my emotions will catch me completely by surprise, especially strong ones, so it could change at any time.
Because I'm very much a "one-day-at-a-time" kind of person, I'm trying not to project too far down the line.
ok...I am shivering....it is cold here...lol...39 ...Florida...brrrr
I just lied in bed...crying.
I am so mad....
I just thought of the many years....I had mono when I was 7...then again when I was 16...then again when I was 24...then again when I was 28....finally I quit being tested for it.....chronic fatigue..they tell me..One Dr.metioned Ms...10 years ago ...the second
time 16... I started the severe aches all over...especially in my legs....it would roam...from leg to arm...from arm to torso....from torso back to leg....I could take tylenol...and count the minutes till relief!!!
I am 36 now....still having the aches....I went through college....Was in dance company....tae quan do.....did everything till it made me sick...I endoured it....I would lie in my dorm room....aching....sick from all the exercise and heat....
I didnt know....
Got married...got pregnant...everything great....till 2 months after pregnacy....my legs started to freeze and stretch without me telling them to!!!! weird!!! But I didn't go to the Dr....Just thought, it is just me...
Now, I know something was not right....
I just get so frustrated.....listening to the Dr's tell me I am just fine....
sorry my friends....I just needed to get it off my chest per say.....
I love each and everyone of you, and thank God for this forum...for Quix, for Heather our backbones.....
I am sure I have left out much of my lying in bed crying outburst, but I got a lot of it written....
I hate Mono.....I don't know it that is what caused my symptoms...but I sure dont doubt that it has a role in it.....
I was born in Japan, (navy brat) and never got sick until I moved to
It is so embarrasing to have to cath in front of my boyfriend...
It really sucks....invalid I tell myself...why cant I pee!!!!!
Then I love my good days..!!!! LOVE THEM!!!!
hate the bad days....Really hate them....
I am not DX....I dont' want to be...but something deep down inside, just says to give it time....the right Dr. will come along and listen to me....I have found the greatest urologist...he listens....asks questions....he really knows me....and understands what I am going through
love each and everyone of you!!!!!
Thanks Heather...may your trip be safe.my deepest sympothies....
pins and needles....sorry for your DX.....We are all here for you....Dx'd or not :)
THIS IS A REAL GREAT IDEA.
I WILL POST IN A FEW DAYS,
I'm not well known around here. I just have a hard time talking about problems. But since my husband and I are going to marriage counseling today,(this will be our first session) I thought I would practice talking.
My emotions go up and down. Sometimes they keep going up and down over and over and I end up getting sea sick.
I have to admit that when my MRI finally showed the MS this time I was happy. I felt relived after 27 years of telling one doctor after another and having 2 MRI's and nothing. Now I can go tell those other doctors Nani Nani Boo Boo.
I finally told my husband to quit taking my home-making job away from me. That if I need help I will ask for it. That just makes me so angry with him. I know he is just protecting me from frustration and pain but why now why didn't he protect me from his sister n law?
I have to tell you all; I haven't had the pain with this until this last week. Sunday I got up to go to church and had a real hard time walking. I could not stand straight up and my legs dragged. By the end of the day I could not move my legs at all. NO I did not go to the hospital or call the doctor. But Monday morning the pain was still there and I could walk. Every day I sit and remember my sister going down hill and she is now in a nursing home. Not even able to sit up. My hope goes way down and the pity party is on. I like chocolate pity party cake what kind do you like?
It is time to put away the cake and start living my life like I had planned. I now have 3 grand babies they are 3,2,1. I enjoy spending time with them. They are my life right now.
I enjoy reading the post on this forum.
Heather my heart is with you.
Quix, I pray you are doing better. You and Heather are really great.
Well I need to go my right eye is hurting and my left see's double all of a sudden, again.
Love you all
I will let you all know how the counseling goes. (He is the one that made the appointment so that makes me feel good. I know he wants to make this marriage work)
My name is Elizabeth but I go by Eliza. That is what my mom has called me since I was born.
This is a good idea Heather. Not only to allow each of us to vent, but to see how everyone else handles all of this.
Lately I just keep it all in because that’s what works for me. I tell everyone I am fine because it is the easy way to deal with it.
The other day I did have a slight breakdown, while I was alone, and vented to myself in a mirror, and that seemed to help. I grew up keeping everything inside and I seem to have fallen back into what worked so many years ago.
Family and friends really don’t want to hear the same song over and over. I still sense doubt from those around me and that is one of the hardest things to handle, so I simply don’t talk about it.
My husband is a great person, but unable to be someone I can lean on for support. I’ve accepted that.
My life is what it is. It’s up to me to get through this and I think I am doing okay.
Soooo very much is going on with me right now! On top of my MS, DH who has been the strong one, is now even sicker than he was with kidney stones. His diagnosis doesn't look good for me and I rittled with anxiety about what to do for the future. Here are his synptoms, a swollen spleen, had ultra sound that showed it, has elevated liver enzymes, low RBC and low platelets, has chronic pain on right side near ribcage that radiates into the back and this pain is now also near his left ribcage. Google that and given what the docs are doing, this is scary!
I am trying so hard to pray about all of this, but all my spirit can do is groan. Have faith, Keep faith that's what my church friends say. And I am trying to be positive. But hey there is the reality of it all and we are in for one tough ride here. Yes I know that God is the great physician, all of that, but I can't grasp that right now. I am watching my husband really suffer with pain and chronic fatigue. The doctor told him when he sees the pain managment doctor to have his pain meds increased so he can be "comfortable". I didn't like the way that was stated at all.
About me, well, tomrrow I was supposed to go for my first Tysabri infusion, but now I can't bring myself to go. For those of you who don't know, I had a severe reaction to Rebif and almost died. So I am very apprehensive about all DMDs. The way I view my MS right now is that mine is progressing slowly, so unless something drastically changes, why worry about the meds now. After all, I've been diagnosed for 3 1/2 years and I am still very mobile and do quite well.
I feel like I am falling into a black hole. Well, I have already fallen. I don't know what to pray. That for me is usually not a problem. However, I usually pray for others not myself. Spiritually I feel bankrupt. Almost like a lost soul.
I know stress is not good for MS. And I know that any given day everything for me could go south. I got lesions, but my symptoms are very minimal right now. Sort of puts me in a state of almost denial.
Then there are my 2 teenagers. My daughter who is 14 and my son 15. They know things are horribly wrong with Dad. There's no hiding that. Also, they are wise beyond their years. But they are good teenagers and I am thankful for that. We are an extremely close family. I am thankful for that also. There is no problem with openess and honesty. I just didn't want them anymore burdened than they already were. Hubby going through the bout of kidney stones was just awful on all of us. Now it looks like the road just got tougher.
I guess I am having a pity party. And I am sorry. You can all tell me not to come back if you want to. I'd really actually understand if you did!
I DO NOT NO HOW I FEEL.
I AM VERY SAD AND SCARED. I WILL BE HONEST.
I WILL NOT SLEEP NOWING I HAVE EYE PAIN,
I AM SCARED THAT I WILL NOT BE ABLE TO SEE. IF I FALL ASLEEP.
I AM TRYINTG TO UNDERSTAND ABOUT THIS SH-T I HAVE.
I USE TO BE VERY STRONG
AND HAVE HANDLE ILLINESS IN MY FAMILY FOR
A LONG TIME. BUT NOW IT IS MY ILLINESS.
AND I DO NOT NO WHAT TO DO. I CAN NOT WORK ANYMORE.
AND BELEAVE ME I AM DYING TO MAKE MONEY.
I FEEL HELPLESS AND ALONE.
SORRY BUT I HAD TO EXPRESS MY SELF.
I THANK YOU ALL FOR BEING HERE FOR ME.
BECAUSE I HAVE NO ONE ELSE. NO ONE ELSE.