Search Discussions

Main Content

  • Bkboo
    Hi Lexie, I have started the Tysabri but will only do it for a year because I tested positive for the JC Virus. Its been (cognitively) a struggle and I get so mad when I have to do things. Ive been slowed to a snails pace. To me I went 150 mph all the time, active etc. After the tysabri ends I dont know what to go on. I have active lesions all over my head, I am not aware of how many but I am getting my report soon. I was so against medicince after the awful effects of beta seron in the early 1990s....but I too, have to face the effects of MS. Im glad you found something that is "doable" and you can enjoy ur weekends! :)
  • Donnamarie
    Hi BKboo, I was really active too, in my younger years and after I stopped working, it felt like the less I did the lazier I get. I have tried to get my s--t together and somedays I accomplish more than others. I still feel like I am working my rear end off only to realize I haven't accomplished a thing. I am an at home mom of 2 boys 6 & 3yrs old. I started getting depressed and the anxiety was building in my system. My house looks like it has a tornadoe living here and my husband doesn't understand why. He thinks I should be able to do all the things an at home mom does plus have a normal life. I have an appointment next month with the Neurologist and probably another MRI. Just a check up to see how I am doing with the Gilenya. I was going to start the Tysabri and tested positive too so they started me on Gilenya. I used to get the sinus flu-like symptoms when I took the other MS therapies. I have been on Copaxone, Beta Ceron, Rebif and one other injectable I can't think of I think....LOL now that I am on Gilenya which by the way is a pill I have less sinus issues than I have ever had. Maybe you could look into the Gilenya when your year is up.
    Positive thinking even on your worst day makes it go a little better. Lots of Love and Prayers sent your way. <3
  • Bkboo
    hello Bella26, you know what I am talking about! I too competed competively and attained many 1st place tophies in fighting. Although, I havent competed in pfft 10 yrs, I took my students and coached. My cognitive problems drive me nuts and I have a hard time dealing with the fact that I cant multi task and go soooo slow. And forget something, lock myself out of the house or walk into a room wondering what it was that I came in the room for...which happens a lot throughout the day. I can relate about the  couch, right now that is where I am at, depressed and just down. I have no interest. My dog gets taken care of, walks to the park etc. That is all it seems.. Its been tough and my whole life has changed. Thanks for writing its good to know Im not alone in this and there are people who get it!
  • Bella26
    Hi! Dont get discouraged with the management part of this disease. You'll have days that you feel completely like your "oldself" and other days that are difficult to comprehend. I'm also an artist; I mainly draw in graphite...I like that fine detail! Imagine how difficult it is to draw with vision problems and detail oriented work? Not to mention it takes me sooo much longer...I guess it's a good thing I have a lot of time. I notice if i have a good day, I'll generally need a couple days to recoup. My short term memory is now shot as well, that can lead to some embarrasment and people getting annoyed with me, but I gotta laugh at myself. I actually put on a front and acted like I was so tough, this disease wasn't going to break me. All it did was make me sicker. In January I was finally honest with my doc about my depression...he put me on Cymbalta; definate change in my disposition and it's helping the pain in my legs. Your right it is weird when you think how these things occur, then all of sudden it's your life...pretty surreal actually. You sound like you have a positive attitude, which is good. Remember you'll have good days and bad days, just be kind to yourself. Rest when you NEED to, listen to your body more than ever, most importantly stay active.  
  • vpat3
    Hi,  I was just diagnosed 2 months ago via seizure.   I really did not have any warning.  I can only think back to feeling more fatigued and having a tremor in left hand.  But I am a left handed artist and do murals for a living so I thought that was normal.  I can tell you that I was found to have lesions also.   After the seizure I seem to have short term memory issues as well as some trouble cognition as you say.  I am slowly working myself back.

    I feel like I am a different person after this seizure because I was completely out.  I do not remember anything until after 2 days in the hospital I started coming back.
    it was so weird.  So now we work on the "management" of these lesions I never knew I had.  It is an adjustment.  I have started the shots of Avonex because i do want to control it.  I think I can deal with this.  I know we are all different,but talking to others does help.  I am here to talk if you need it.
     
    My experience has been so similar to yours. I had a seizure about 12 years ago, but since they did a CAT scan & not an MRI, they never found the cause. I never had a repeat seizure. My memory issues have been ongoing for a very long time & were chalked up to my migraines (by me).

    Fast forward to this year & I've been ignoring the numbness in my left hand for months because I'm left-handed. But when I went deaf in my left ear, I paid attention. Here I am 2 weeks into my diagnosis. I think I'm coping OK, but I honestly have to say that I am afraid to talk too much about it or to let myself be overtly sad. I don't want my loved ones looking at me with pity or think I'm "milking it" when I feel exhausted. But mostly I'm afraid that if I fall apart, I won't be able to put the pieces back together. My word of the moment is "stoic."
  • StillDancin
    Hi Bella,
    First, I love that you draw.  I love to draw too.  The main reason I was scared of this diagnosis was because i was fearful of losing my ability to do my art.  I also have blurry vision now after this seizure.  I also will go to a store and like, just stand there, as if i don't know what to do.  I also understand the depression and learning to cope.  I think it is ok to allow ourselves to adjust and digest this diagnosis.  I also think you did the right thing by involving your doctor.    Right now I am coping by trying to excercise again and trying to get back to work.  At least with the art I can stay at home  and do a canvas or something.   I am trying to reduce stress too but my husband is the only one working now and is always reminding me about finances.  I don't think he realizes that this makes me feel like a burden.  But I am not allowed to drive yet because of the seizure.  So I will work on your advice to be positive and just chill. 
  • Bella26
    StillDancin;
    Im really surprised how much I have in common with people I've never met! It's actually pretty nice. I remember when my neorologist told me the diagnosis; It was the deer in the headlights look! My doc and I laugh about it now ( like I said, gotta find some humor). I would be tremendously scared to have a seizure, I think you're very brave to handle things like you are. MS affects everyone of us differently; although we may have symptoms that are similar. My husband did the same thing to me. I dont think he means to, but I feel guilty. My mom and I joke that he thinks Im faking it, haha; imagine faking something so horrid. If I wanted to quit working and be a freeloader I would of picked someone who made more money..lol. I sometimes feel like a burden as well, I even went back to work for a while; I just ended up getting super sick and cant work at all now. Never quit the art or you'll lose yourself..I know it's hard to be positive, but what's the alternative? If you can keep painting, do it! If you can keep laughing, do it! I havent painted in a long time, I think I'll give it a whirl...I have some Picaso crazy ideas going on in my head, I should put them on canvas!
  • Bkboo
    when I first was diagnosed early, 1990s, I (in my mind) kicked MS in the butt and THOUGHT Id just get ion with life. I remember one attack, I couldnt walk or move, only my head could lift. My boyfriend at the time, freaked out so I was consoling him. The next day, it went away. Still limping, I just got on with my life. Didnt tell many or talk abouit. I also did not want pity.facing it worked for me at the time, I was young and a spitfire. Now, being sick is a completely different experience. I am older, plus coginition problems are no walk in the park! I wish I had the attitude I did when I was younger. But everyone is where they are with dealing with MS. DOnt be hard on yourself...and if you do fall apart thats ok..... You will eventually pick up the pieces. 
  • StillDancin
    I just have to say that I am kind of viewing this as a kind of wake up call.  I feel like I had a type of near death experience.  Whatever I am supposed to be learning from this I am gonna try to be open to.
    Today I see my neurologist to see what he says.  I am bringin my husband, this will be the first  time he has met with a doctor with me about  this.  This is good.

     
  • ttf
    Bella,
    I can't drive anymore; Can you?
    I am just a stay at home and complain housewife.

    T
  • Bkboo
    good luck and keep us posted :)
  • Bella26
    As much as I hate having this disease, it does open your eyes to life. You certainly don't take things for granted anymore, & want to live everyday likes it's your last, as long as your able. Love people as much as you can. Your husband will come around; he's afraid too. I hope all goes well, as Bkboo said, keep us posted and best of luck and wishes!

    Bella26 
  • Bkboo
    Thersea, hang in there...I am having a lot of sad sad feelings, I wish I would cry I am just sad. My dog cheers me up also :) dont know what Id do without him!
  • Bkboo
    Kelly I was also diagnosed at your age....after a few years of having attacks, doing medicince. I decided to stop. The MS  went into remission for almost 20 yrs. I have recently had an attack and now im trying to understand and for the first time deal with it...i didnt at your age, I just tried to go on with my life. Now Im finding it hard to deal with and I struggle every day. It is a scary thing for sure.   Its so hard figuring out this disease. I look okay and people who dont have MS cant possible understand. Ive needed friends and some family members to get it. But I think wether they understand or not I have and will take care of myself. If Im tired, rest, etc. even when friends guilt inflict and say things that make me feel Im lazy, etc they dont understand. like o come on, if u just did this  you would feel better, etc. They are just trying to make me better. My ex flipped out when i was first diagnosed. I had to calm him down. Meanwhile I was having an attack and could not move from the neck down....i think about that now and laugh. Take care of yourself, only you can.. 
  • Cordelia
    Kelly A I am sorry that you are part of the MS family! I still get over whelmed with MS (reading about what could happen or what is happening to others with this disease) for me I had to stop search for MS and what is related to this disease it's the only way I can cope...There is a lot of information out there my best advice is to get you a small note book and write any changes down (dragging your feet, lost feeling in your body, electrical tingleing etc...) or just questions to ask your doctor. Another thing you really need a doctor that is supportive I am on my 3rd doctor and I do believe I finally found the right doctor.
    As far as husband go, no they dont get it because they cant see the disease as easy as other diseases. I was diagnose july 2010 he has been to a couple of doctor appointments and yet I still have to explain to him or remind him about MS. I recommend getting some information from National MS Sociality pamphets explaining about MS. I did and I pass information to him and my family.  Because for one how can I explain when I didnt/dont really get the ins and outs of MS....

    This site is great with meeting people and being able to talk to someone or a lot of someones.

    This journey we are on is not easy one but together we are stronger than going at it alone.
    You are welcome to add me or contact me clover196968@yahoo.com
  • Kelly_A_
    Its funny you mention having to stop researching things about MS and what can happen and has happened. I myself have been to scared to really look into it because the few things I have looked up have  scarred the crap out of me.  My diagnosis came completely came out of no where I was sent to a neurosurgeon to see if surgery would do anything for my lower back issues and when he checked my reflexes he felt that they where over sensitive so he decided to do a complete spine and brain MRI. When he went over the MRI results that's when me journey started. He told me about the lesions they found on my brain and in my cervical spine that where consistent with MS but he was unable to officially diagnose me because he wasn't a neurologist. I saw him in November and was referred to a neurologist who I saw in December who was still hesitant to confirm the diagnosis because he wanted to make sure. I was going to be monitored and return to his clinic in February towards the end of the month. Then I had my first official attack that I was completely aware of on February 5th my entire left side from my shoulder to my toes went completely numb I spent 2 almost 3 days in the hospital getting the MRI's redone, a spinal tap and a steroid treatment. about a week after my birthday I went in to my neurologist who happened to be on the neurology team during my hospital stay confirmed my MS. So I went from November to February in the world of knowing MS was possible but not officially being diagnosed ( though my gut told me I had it) it drove me nuts not knowing for sure. Then I found out that a symptom I have had for years and asked many doctors about and they all looked at me like I was crazy when I would describe it was attributed to my MS and I never would have imagined it. When I bring my chin to my chest or bend in just the right way I feel an electrical pulse in the middle of my back its a really quick pulse but the symptom is almost always present and now I know why. I am so sorry for the really long post but this is the first time I have been able to talk to anyone who has been in my shoes thank you for being there and I am so glad I found this site. <3
  • RKB
    I was recently diagnosed and I've been pretty open about it.  I work in health care so some of my colleagues already know the story.  My husband is very supportive and I know he'll be there for me, but he will never truly understand.  The thing is, none of our family members or friends will really understand, but it's not their fault.  They can do all the reading they want, it won't help.  It's up to us to help them understand as best as possible without being resentful of their responses.  It's tough for them too.   What really bothers are the people who say they know what it's like when they don't.  When I tell someone that I have some symptom or other (memory loss, balance issues) and they say " oh, I have that, it's just that we're getting old."  I feel like they're dismissing my symptom by saying it's no big deal.  I don't know what to tell them.  I don't want them to feel bad, but I want to say yours goes away.  Mine doesn't.  You don't have to worry about it getting worse.  I do
  • vpat3
    Any advice on how to deal with a husband who thinks that, now that I am on Tecfidera, I'm essentially cured? In retrospect (for me, at least) it was a mistake bringing my husband to the neurologist with me. He heard, "You are just fine right now." and nothing else. I find that I'm reluctant to even discuss my disease with him because he brushes it off as nothing.

    Fingers crossed that I won't have another flare up, but that doesn't mean that I don't still suffer symptoms like eye pain, tingling and fatigue.
  • Avatar
    Its funny you mention having to stop researching things about MS and what can happen and has happened. I myself have been to scared to really look into it because the few things I have looked up have  scarred the crap out of me.  My diagnosis came completely came out of no where I was sent to a neurosurgeon to see if surgery would do anything for my lower back issues and when he checked my reflexes he felt that they where over sensitive so he decided to do a complete spine and brain MRI. When he went over the MRI results that's when me journey started. He told me about the lesions they found on my brain and in my cervical spine that where consistent with MS but he was unable to officially diagnose me because he wasn't a neurologist. I saw him in November and was referred to a neurologist who I saw in December who was still hesitant to confirm the diagnosis because he wanted to make sure. I was going to be monitored and return to his clinic in February towards the end of the month. Then I had my first official attack that I was completely aware of on February 5th my entire left side from my shoulder to my toes went completely numb I spent 2 almost 3 days in the hospital getting the MRI's redone, a spinal tap and a steroid treatment. about a week after my birthday I went in to my neurologist who happened to be on the neurology team during my hospital stay confirmed my MS. So I went from November to February in the world of knowing MS was possible but not officially being diagnosed ( though my gut told me I had it) it drove me nuts not knowing for sure. Then I found out that a symptom I have had for years and asked many doctors about and they all looked at me like I was crazy when I would describe it was attributed to my MS and I never would have imagined it. When I bring my chin to my chest or bend in just the right way I feel an electrical pulse in the middle of my back its a really quick pulse but the symptom is almost always present and now I know why. I am so sorry for the really long post but this is the first time I have been able to talk to anyone who has been in my shoes thank you for being there and I am so glad I found this site. <3
    Kelly A. and others,

      Just wanted to mention there is another MS support group that is not affiliated with the MS Society and it is extremely supportive.  It is at:

      www.dailystrength.org. 

    It is not religious in any way.  There are over 500 hundred support groups on there and the MS support group that has over 5000 members and lot of people who are very knowledgeable.  Also people with spouses with MS have a sup group for their own support. 
  • Cordelia
    Kelly A please dont apologize....I know its NICE to talk with someone who "knows!!