Announcement

Collapse
No announcement yet.

Please help. Losing hope

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Please help. Losing hope

    This is my first time to post but have had RRMS (though not much "remitting" over past couple years). I desperately need to hear from others with MS who may have similar symptoms.

    My fatigue symptoms have gotten so bad, I can't imagine it continuing to worsen.

    Some days, I can hardly accomplish the simplest of tasks. I can not attend any family gatherings because the talking (or just listening) totally wipes me out. It actually "hurts" my brain to think. It gets worse as the day goes on and feels like my brain is swollen inside my skull. I avoid telephone calls because it tires me so. I feel very isolated because the fatigue is so bad. I avoid even phone calls because after a 10 minute conversation, it puts me in the bed for sometimes, hours.

    I am still able to walk short distances and do not use any assistive devices yet, but am having some falls over the past month. I'm losing strength in my legs. I have vertigo and migraines, vision trouble, numbness and many other symptoms, but the cognitive decline is so scary. My memory, ability to focus, ability to have a simple conversation seems to be declining at a rapid pace!

    I am having trouble describing my pain and cog-fog. I was diagnosed in 2001 and treatments have included interferon shots, tysabri and finally lemtrada. I use to have good days AND bad days. But the fatigue and cog decline have taken over. I stay confused, uexhausted, and isolated as a result. My faith in God keeps me going, but am doubting how long I will last.

    #2
    Hello marie24,

    Have you discussed what you have written with your Neurologist?

    Have you tried any of the medications for fatigue? Such as:
    - Provigil
    - Nuvigil
    - Attention Deficit Disorder (A.D.D.) medications --- Ritalin, Adderall, ect.

    It's not uncommon for those with MS to have sleep disorders. A sleep study can help in this determination.

    I am still able to walk short distances and do not use any assistive devices yet, but am having some falls over the past month.
    This would indicate it's time to start using a mobility aid (cane, walker, trekking poles, wheelchair) before you seriously hurt yourself.

    I'm losing strength in my legs.
    It is very important to exercise and recommended by the National Multiple Sclerosis Society as well as many Neurologists. The type of exercise needs to take into consideration of the person's abilities/inabilities. Even those in wheelchairs can exercise. A Physical Therapist (PT) can be helpful in this area. A PT can also show you the proper use of whatever mobility aid you decide to use

    Please don't settle for "it's just the MS." It's easy to do but there can be non-MS health issues that could also be causing symptoms. Have you had a recent Physical and bloodwork?

    Do you take any medications, for MS or other health issues? Many times medications are an overlooked cause for an increase of symptoms which we then assume is MS.

    Take care
    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


      #3
      Thank you, Snoopy for your reply. I appreciate any advice I can get.

      I see neurologist every 4 months and have complained about this each time but the confusion, "brain" fatigue from just talking, and the swollen feeling on top of my head are either new or much more severe from before. My next appt includes an MRI and is in early September.

      Last visit, I started ampyra and aderol. I have tried Provigil in past without luck.

      As for sleep, I have had insomnia since the beginning of my ms history. I have used many different medicines and am currently taking restoril and Ativan for sleep.

      I did try to call neurologist yesterday but could not get through due to busy signal. Also thought I'd wait for my monthly lab results (it was drawn Monday) which I have to have drawn at a separate lab facility because of the lemtrada program. Maybe it will show something. However, I can't think and believe, well I don't even know
      I'm sorry I wish I could write positive things. I do very much appreciate advice and will try to call neuro again today.

      Comment


        #4
        Hi marie24,

        am currently taking restoril and Ativan for sleep.
        This sent up read flags for me.

        Please think --- did your cognitive problems and fatigue become worse after starting Ativan(lorazepam) and Restoril (Temazepam)?

        If the answer is yes it is more than likely these medications causing the problem. If the answer is no it is still possible those two medications are making your symptoms worse.

        Both medications are Benzodiazepines. Although they can be helpful for the reason they are prescribed they do come with side effects that can be serious. They can be addictive but not everyone becomes addicted.

        Benzodiazepines may promote the development of Alzheimer’s:
        http://www.health.harvard.edu/blog/b...e-201409107397

        the confusion, "brain" fatigue from just talking,
        new or much more severe from before.
        Again, this leads me to suspect Ativan(lorazepam) and Restoril (Temazepam) as the cause.

        Some of the side effects of Benzodiazepines:

        - Confusion - mental fatigue/mental fog.
        - Fatigue
        - Drowsiness/tiredness/fatigue
        - Poor balance --- Lack of coordination
        - Weakness --- depends on dosage
        - Dizziness

        That is just a few side effects.

        Do not stop taking Ativan(lorazepam) and Restoril (Temazepam) "cold turkey." The proper way to stop these medications is to taper off slowly.

        I don't know marie24, but maybe it's time for a new Neurologist one that would be more helpful than throwing more medication at you and do other testing to determine if what you are experiencing is MS, medication(s) or another medical condition.

        Since you are having such a difficult time with your thoughts try writing things down and take the list with you to your appointment(s). It would helpful if you had someone with that could act as your advocate since your cognition is so bad.

        Due to the cognitive issues your Neurologist should send you for NeuroPsych evaluation/testing. This is cognitive testing and is helpful and used for many different diseases.
        https://www.med.unc.edu/neurology/di...ers/npsycheval
        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


          #5
          Hi Snoopy. I did get my call through to my neurologist's nurse today. He was not on office today but she will review my symptoms with him in morning. I believe I need an MRI but will see what he says. My lab work all came back good.

          I take a low dose of restoril and Ativan at night. I've had to take insomnia medicine for over 15 years. It is not a new combo for me. I can't function at all if i only get 4 hours of sleep. I've been to sleep specialists and tried sleep behavior therapy. Nothing works. I hear what you are saying about the current two. I can discuss with him at next appointment. Oh, I do have a lesion on my brainstem (not new) that could be a contributing factor.

          I have read other ms blogs where some have incredible cognitive disabilities. My head feels very swollen. It felt this way in the past when I had new lesions/ relapses.
          I will try just one of the medicines tonight instead of both.. But I feel in my heart I am having new inflammation. I am hanging on by a delicate thread.

          Comment


            #6
            dont give up

            I know that this is scary as he** but you've got to try to hang on. I've had this horrible gift for20+ years I'll be 50 on May 2. I know what it's like to B isolated. No longer drive or work & my daughter is now 20 so she pretty much does her own thing. I am divorced so it's just me & my cat. Pets R great companions if you R alone. I can totally relate to the cog problems & fatigue. Most days I don't want to do anything! I realize it's just easier to stay in but being alone really starts to suck! If U don't mind me asking--How old R you? That's good 2 hear that you have faith, don't give up on God. I realize sometimes it's hard, but He's always there 4 you. You've found a chat buddy in me. Take care & God bless. Peace.................

            Comment


              #7
              Taking Up the Shield of Faith!

              Thank you Vampira so much for your encouraging words I so much needed. I am very scared!

              I am 53 years old. I am married. My husband is sweet to me, and has been there for me and I'm grateful, but I know it hurts him to see me like this. Plus I am no fun to be around. By the time he is home from work, I can hardly hold a conversation. I have 1 son, age 20 and I know he is horrified by my decline. I also have an adorable small dog that gets me through the day. But, even though married, I still feel very isolated because of this horrible disease.

              For the past 15 years I have been so positive and even during relapses, I tell people, "it's ok, I'll be fine in a week or two". This, though, has pulled the rug out from my feet. I pray a lot, but am having trouble even concentrating on that! I keep up with research and just pray we can all make it until treatments to heal and reverse damage can come to reality!

              Comment


                #8
                Hi Marie,
                You said you are taking Lemtrada- how long for ?
                Could your increased cog fog coincide with it or any of the other cocktail of drugs given in unison?
                I am in the process of deciding to start Lemtrada - for primarily memory issues and brain atrophy.
                In the process of researching supplements, treatments and other possible contributing factors I have discovered that menopause can cause memory problems too.
                Is it possible that something else may be making things worse?
                The isolation and fatigue is the hardest to cope with!
                My own quote:" I'd rather be in a wheel hair than losing my marbles."
                It's hard not to worry those who care about you.
                Information overload (in noisy or busy) gatherings seems to increase fatigue and cog fog issues . I have found 1 on 1 encounters easier to deal with.
                All the best.

                Comment


                  #9
                  Hi, when did you have the infusion? Did you do the 2nd? I didn't really read through every response but I am considering Lemtrada and read the posts on the Lemtrada facebook page. I read all the time about people feeling worse afterwards. And not just immediately after but for MANY months after. Then they slowly get back to their normal from before infusion and some actually slowly see improvements.......some little, some big.

                  I have also read that the second infusion really helps. I apologize if someone has already said this. If you are not on Facebook you should join to just to get in that group. There are so many people that could answer questions based on their experience and you can just read peoples' experiences since many write about them in a files section of the group. The group is very busy with many new posts everyday. Their motto is "it's a marathon not a sprint". I have to decide if I want to try this drug. DX in 2002 and it scares me to know that I will be worse for a while.......I already don't walk well and body fatigue is overwhelming that I really don't do anything. I wish you the best, Traci
                  dx 2002 rebif 2002-2013 Tecfidera 2013

                  Comment


                    #10
                    Thinking about you Maria

                    Hi Maria, I just prayed for you! that God would continue to sustain you through this storm and that he would even heal you by bringing you totally on the other side. Be it His will to use your doctor, medication, or His healing and that your faith would grow. He is in control and He loves his children!

                    Please give us an update, we care.

                    Comment


                      #11
                      Originally posted by marie24 View Post
                      Thank you Vampira so much for your encouraging words I so much needed. I am very scared!

                      I am 53 years old. I am married. My husband is sweet to me, and has been there for me and I'm grateful, but I know it hurts him to see me like this. Plus I am no fun to be around. By the time he is home from work, I can hardly hold a conversation. I have 1 son, age 20 and I know he is horrified by my decline. I also have an adorable small dog that gets me through the day. But, even though married, I still feel very isolated because of this horrible disease.

                      For the past 15 years I have been so positive and even during relapses, I tell people, "it's ok, I'll be fine in a week or two". This, though, has pulled the rug out from my feet. I pray a lot, but am having trouble even concentrating on that! I keep up with research and just pray we can all make it until treatments to heal and reverse damage can come to reality!
                      I can relate to such severe fatigue that you can hardly hold a conversation. It takes such great effort to speak. I will keep you in my prayers Marie. I pray a lot also and I know what it's like to scream in your head, "Father, please help me! I can't do this!" I hope you find a system that works for you soon and that you get quality of life back. Keep posting here for support while you go through this. <3

                      Comment


                        #12
                        Hi Marie, I was thinking about you and wonder, how are you feeling?

                        Comment


                          #13
                          prayers lifted!

                          When your ready, reach out. We would love to know how your doing.

                          I know due to the delayed responses, it makes it harder to give and receive support. But I've really been praying a lot for our group here.

                          Is there any thought to remove the delay from writing and posting. I think it would help us all to give and receive support when we need it.....and yes I have tried chat and that moves way to fast for me.

                          Comment


                            #14
                            Originally posted by Tia1 View Post
                            I know due to the delayed responses, it makes it harder to give and receive support. But I've really been praying a lot for our group here

                            Is there any thought to remove the delay from writing and posting. I think it would help us all to give and receive support when we need it.....and yes I have tried chat and that moves way to fast for me.
                            Hi Tia,

                            To keep MSWorld a welcoming and safe site, all posts must be approved by a moderator before appearing on the site. So, unfortunately there may be delays. We do try our best to keep them at a minimum, but MS and life in general do not always cooperate. Thanks for your understanding.
                            Last edited by Kimba22; 10-12-2016, 10:26 AM.
                            Kimba

                            “When you change the way you look at things, the things you look at change.” ― Max Planck

                            Comment


                              #15
                              Kimba, thanks for making this a safe place for us. Do you guys need help with that sort of thing? I'd be happy to help out.

                              Comment

                              Working...
                              X