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Just spent 8-10 days in hospital-need imput please

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    Just spent 8-10 days in hospital-need imput please

    I've been diagnosed for 15 years. One day I am pulling weeds on a nice day not even breaking a sweat andtwo to three days later I'm being taken by ambulance to the hospital only remembering bits and pieces at best and not even sure if any of it is real. I am home now having inhome therapies. I'm being told it is the worst exaserbation i've ever had and by the way I feel, I don't doubt it.

    My question is my muscle strength. they make a big deal because I can feed myself when I drop it alll over and eat like an animal, everything I do takes every bit of energy both physically and cognitavly to even write this. everything is a struggle and so confusing. I don't remember coversations or even seeing people. It is hard not nowing what is even real. did I eat? sometimes i know, sometimes i guess. I'm never left alone and have dreams that range from dreams to terror that I have trouble waking up from.

    anyone ever dealt with this and came back to close to your old self? my whole body is effected except my speech. its unusnal because it is one of the first things to go but what ai say doesn't make sense a lot of the time to me.

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    Kalliope,

    I am so sorry about your current struggles. You are in my thoughts and prayers this morning.

    Years ago, before Tysabri, my spouse had vicious flare-ups of MS. There were times she could not walk nor lift a spoon. She gradually recovered using pulsed steroids as you may have received in the hospital. Recovery sometimes took weeks.

    After approximately 15 years on Tysabri and two years on Ocrevus today she leads silver sneaker classes and yoga classes at the Y, having had no flares while on those two highly effective DMTs.

    So yes, recovery from vicious flares does happen and I believe it will happen for you, also, dear one.

    Hang in there! Please know I am pulling for you. Please know I am believing for your complete recovery in strength, health, and happiness in sending a ton of compassion to you this morning.

    Comment


      #3
      Originally posted by Kalliope View Post
      I've been diagnosed for 15 years. One day I am pulling weeds on a nice day not even breaking a sweat andtwo to three days later I'm being taken by ambulance to the hospital only remembering bits and pieces at best and not even sure if any of it is real. I am home now having inhome therapies. I'm being told it is the worst exaserbation i've ever had and by the way I feel, I don't doubt it.

      My question is my muscle strength. they make a big deal because I can feed myself when I drop it alll over and eat like an animal, everything I do takes every bit of energy both physically and cognitavly to even write this. everything is a struggle and so confusing. I don't remember coversations or even seeing people. It is hard not nowing what is even real. did I eat? sometimes i know, sometimes i guess. I'm never left alone and have dreams that range from dreams to terror that I have trouble waking up from.

      anyone ever dealt with this and came back to close to your old self? my whole body is effected except my speech. its unusnal because it is one of the first things to go but what ai say doesn't make sense a lot of the time to me.

      ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
      Hello Kalliope

      I'm very sorry to learn about your recent relapse, and the difficulties that you are now dealing with.

      It's good to know that you are receiving in-home therapies, and that you are not alone, with someone currently always there with you to help out.

      I have never experienced a relapse, as I have PPMS (although it is still possible to have one). The unexpected suddenness of a bad relapse must be distressing and overwhelming, to say the least.

      I have seen members post about having a bad relapse, and after going through therapies, have recovered to a good extent.

      It will probably not be easy, but try to remain hopeful that with therapy and time, you will have a good recovery.

      Please continue to post and let us know how you are doing, even if you just need to vent. We are rooting for you, and wishing you all the best.

      Take Care
      PPMS for 22 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        Kalliope,

        Sorry to hear about your relapse. I can only imagine how frustrated you must be. I have heard of recovery happening up to a year after a relapse. I am really glad you have your therapy in home.

        As hard as it is for you to see, I am sure your therapist is celebrating that you can hold a utensil. Hopefully with time and your hard work, you will be able to celebrate your recoveries, even the smallest ones.

        Sometimes the hardest part of any recovery is the time it takes. We never want to wish our life to speed by, but these are the times you want to fast forward and get to the end.

        As for memory, are you on any new meds that may contribute to issues? Has your sleep been impacted? Fatigue increased? Aside from the relapse, other factors, even stress, can negatively impact memory and also the focus it takes to commit to long term memory.

        Please keep us updated when you are up to it. You will have many people here cheering you on as you recover.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          Hi Kalliope.

          I am so very sorry

          Can you come back from a severe exacerbation? Yes, it is possible. It can take time, patience, hard work, and possibly frustration and tears.

          I have never had cognitive dysfunction with any exacerbation, mine are all about mobility, but I would deal with physical exhaustion. It has taken me a year to recover from a few of them.

          pennstater:
          As for memory, are you on any new meds that may contribute to issues?
          I am wondering the same thing.
          Diagnosed 1984
          “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

          Comment


            #6
            Originally posted by SNOOPY View Post
            It can take time, patience, hard work, and possibly frustration and tears.
            Kalliope, my thoughts and prayers go along with the others who have responded with true compassion to your thread. The above sentiments apply to everything in life. You will move forward from here.

            Comment


              #7
              Thereapist just left

              she did a lot of writing, looks of confusion tried to move things and said shed see me soon and to keep working on it. my left side stopped working. i've been on iv steroids, workimg on a taper that they made stronger and i am losing more. i'm weaker. spasticity is all over. no one gets why. i fianally felt something in my leg for a short time. fire. not burning, fire, i fully expected to look down and see my knee on fire like a log blazing in a fireplace. thank god it only lasted a little while then went numb again. . sincs then, no feeling. no movement. its like things are going backwards and theres no answers.

              i've been on several dmt. body doesnt tolerate them, they stop working . next comes the one that starts with o. i know of 5 that i can remember over the years. this being the5th i think. ive learned to walk at least twice before, speak, eat, take care of myself...you all know the drill. just never kept going backward. even a little improvement would be great but i havent even had side effects from steroids. i type like a chicken and ometimes onder if that will be the next to go away. i have no choice but to keep working even though nothing is happening. thank you for your words of encouragement and replies

              ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

              Comment


                #8
                Hello Kalliope

                Thanks for the update on how you're doing with recovery.

                Originally posted by Kalliope View Post
                i've been on several dmt. body doesnt tolerate them, they stop working . next comes the one that starts with o.
                Might be the dmt called Ocrevus?

                Originally posted by Kalliope View Post
                i have no choice but to keep working even though nothing is happening. thank you for your words of encouragement and replies
                Wishing you strength, patience, and perseverance as you move forward in recovery.

                Please continue to post, when possible, and keep us updated. Thanks!

                Take Care
                PPMS for 22 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                Comment


                  #9
                  Kalliope,

                  Thanks for the update. I hope that with time, things improve. Since you have been thru it before, you obviously have tenacity and are a fighter. I admire your inner strength and pray you see some results.
                  Kathy
                  DX 01/06, currently on Tysabri

                  Comment


                    #10
                    Oh Kalliope I just want to send you ((((Hugs)))).

                    Recovery can be so very difficult and you start to wonder if this is how you will always feel and/or be. You have had the strength, will, and faith to get through other exacerbations and I believe you have it in you this time too. We all know MS unpredictable as is the exacerbation and recovery.

                    Hold on to that inner strength, keep working with the therapist(s) and come here when you need to talk to people that understand. Sending Blessings and Peace
                    Diagnosed 1984
                    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                    Comment


                      #11
                      Update-I don't know what to say..

                      First of all thank you for all your kind words, they mean more than you know. I'm not on any MS meds right now but we're looking into some of them. I have other medical problems that doesn't mix well with several of them. It's been awhile since it all happened and even though others seem to say how much better I am doing I just don't see it.

                      They say I am comparing myself to the me before the flare, not the me after the flare when I couldn't move at all. I don't remember what I was like in those days when I couldn't move. Everyone wants me to work on therapy, exercise and eating so I try to do as they say. The prednisone gained me 27 or 28 lbs. which is making the extra weight so much harder to hold my self up.

                      I've fallen 4 times in 3 days and they told me to start using my wheelchair full time. I wasn't falling before the prednisone and weight gain nearly as much before the meds and weight gain. I exercise and stretch the first day, the second day and night I am in so much pain I sleep off and on because I can't sleep through the pain and have no break trough pain medication because I use fentanyl and no one will prescribe fentayl and break through meds together like they used to because they believe no one can use it resposibly, all the new laws and don't want to be resposible for someone overdosing so I suffer both with pain and being exhausted.

                      On the the third day, if the pain had eased enough I sleep the whole day so I miss a whole day of my life. I take fentanyl because it is the only medicine it doesn't cause the pain to go up and down. It is steady, not a pain where you take one at at pain pill time and it starts at a 7, an hour later it is down to a 4 then the pain level climbs with each hour back to the hour when it's time to take another pill and the pain is, if you're lucky back to a 7 if not higher. Fentanyl keeps its steady and even thought it controls the pain so much better, sometimes the pain is even more than it can relieve.

                      I can't find a dr that will give me anything for break through meds, even just literally a few so that I can do my therarpy and exercise so this is even take longer to get better if I am going to get better. After things are better than they are welcome to go back to the fentanyl alone again and I would be greatful. The pharmacist went over the counter medicine things I've tried and non medical things and he asked me if I'd tried tylenol. I wanted to ask him if he'd tried tic tacs for his migraines .

                      I have not much of an appetite and only a few things have any flavor. Except for a few things most things tastes like metal, to salty or cardboard. I've been getting out about two or three times a week besides dr. visits, we see people almost everyday, look forward to fall and even got a jump on Christmas but I look forward to feeling better or if this is this the new me. The answers they give me make no sense. Eat right, lose weight (which isn't going so great) I exercise and do my therapy and try to accomodate to what I am able to do but still have the same problems and if I go to the ER for pain I will be lableled an addict.

                      Oh, my cognitive things; not much better yet either. Maybe I am just confused about the whole thing. Any one have any idea how to lose close to 30 lbs to lose would be helpful too? Last time I did it was by having a couple bouts with pancreatitis. It's all so stressful and we all know what stress does for us.

                      ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

                      Comment


                        #12
                        Originally posted by Kalliope View Post
                        First of all thank you for all your kind words, they mean more than you know. I'm not on any MS meds right now but we're looking into some of them. I have other medical problems that doesn't mix well with several of them. It's been awhile since it all happened and even though others seem to say how much better I am doing I just don't see it.

                        They say I am comparing myself to the me before the flare, not the me after the flare when I couldn't move at all. I don't remember what I was like in those days when I couldn't move. Everyone wants me to work on therapy, exercise and eating so I try to do as they say. The prednisone gained me 27 or 28 lbs. which is making the extra weight so much harder to hold my self up.

                        I've fallen 4 times in 3 days and they told me to start using my wheelchair full time. I wasn't falling before the prednisone and weight gain nearly as much before the meds and weight gain. I exercise and stretch the first day, the second day and night I am in so much pain I sleep off and on because I can't sleep through the pain and have no break trough pain medication because I use fentanyl and no one will prescribe fentayl and break through meds together like they used to because they believe no one can use it resposibly, all the new laws and don't want to be resposible for someone overdosing so I suffer both with pain and being exhausted.

                        On the the third day, if the pain had eased enough I sleep the whole day so I miss a whole day of my life. I take fentanyl because it is the only medicine it doesn't cause the pain to go up and down. It is steady, not a pain where you take one at at pain pill time and it starts at a 7, an hour later it is down to a 4 then the pain level climbs with each hour back to the hour when it's time to take another pill and the pain is, if you're lucky back to a 7 if not higher. Fentanyl keeps its steady and even thought it controls the pain so much better, sometimes the pain is even more than it can relieve.

                        I can't find a dr that will give me anything for break through meds, even just literally a few so that I can do my therarpy and exercise so this is even take longer to get better if I am going to get better. After things are better than they are welcome to go back to the fentanyl alone again and I would be greatful. The pharmacist went over the counter medicine things I've tried and non medical things and he asked me if I'd tried tylenol. I wanted to ask him if he'd tried tic tacs for his migraines .

                        I have not much of an appetite and only a few things have any flavor. Except for a few things most things tastes like metal, to salty or cardboard. I've been getting out about two or three times a week besides dr. visits, we see people almost everyday, look forward to fall and even got a jump on Christmas but I look forward to feeling better or if this is this the new me. The answers they give me make no sense. Eat right, lose weight (which isn't going so great) I exercise and do my therapy and try to accomodate to what I am able to do but still have the same problems and if I go to the ER for pain I will be lableled an addict.

                        Oh, my cognitive things; not much better yet either. Maybe I am just confused about the whole thing. Any one have any idea how to lose close to 30 lbs to lose would be helpful too? Last time I did it was by having a couple bouts with pancreatitis. It's all so stressful and we all know what stress does for us.

                        ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
                        Hello Kalliope

                        So glad that you came back to give us an update on your progress.

                        It's good that others are seeing some improvements, even though you're not feeling it yet.

                        Despite obstacles such as pain, you are working very hard on your recovery process.

                        I have no experience with chronic pain, and therefore am unable to offer any useful advice or insights. It just seems to me that there should be some help for you in dealing with this issue. Hopefully a solution will be found soon.

                        Keep doing the best you can, and try to remain hopeful. We're here for you.

                        Take Care
                        PPMS for 22 years (dx 1998)
                        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                        Comment


                          #13
                          Kalliope,

                          Sorry to hear pain is still an issue for you. I am sure it makes everything more difficult, including sleep.

                          As for weight loss, any chance you could have a nutritionist come in and put together a plan for you? Sometimes, insurance may cover. Or can your doctor recommend a diet to follow? If not, maybe weight watchers online program?

                          If none of that is not an option, sticking to lean dairy, meats, and fish, lots of veggies and fruits, some whole grains. Avoid/limit packaged foods, added sugar foods and drinks, fatty meats, and white carbs like bread and pasta.

                          Glad you posted an update. It does sound like you are improving, even if hard for you to see. Hoping you continue to see gains and can start on a DMT.

                          Keep that fighting spirit going. Come here and vent if you need to. The smallest of gains are reasons to cheer and we are all cheering you on.

                          Take care.
                          Kathy
                          DX 01/06, currently on Tysabri

                          Comment


                            #14
                            Originally posted by Kalliope View Post

                            anyone ever dealt with this and came back to close to your old self? my whole body is effected except my speech. its unusnal because it is one of the first things to go but what ai say doesn't make sense a lot of the time to me.
                            My first two flares, in 2002, were very severe. During the first one, I used a W/C, and when I started PT, I could only lift my leg an inch off the ground when lying down. During the second one, I was sleeping 16-20 hours a day and had almost no short term memory for two months. I recovered well from both of them.

                            I am currently almost 18 years with MS, and I haven't had any (even minor) flares for five years and no major flares for longer than that, so I don't know what recovery might or might not happen with me when my MS is moving in SPMS.
                            ~ Faith
                            MSWorld Volunteer -- Moderator since JUN2012
                            (now a Mimibug)

                            Symptoms began in JAN02
                            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                            .

                            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

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