Hi everyone,
My name is Emily, and I have been reading posts here for awhile now, and wanting very much to post, but I was afraid—every time I started to introduce myself I would end up pouring out my heart, and I would get embarrassed.
So I promised myself I would try to brief and not too emotional.
I am 39 years old and I was diagnosed with relapsing remitting MS almost 8 years ago. I am married and I have a five year old daughter and up until this year I worked full time. I have never been symptom free since my first relapse, but for the most part the symptoms were liveable (even though if you’d asked me at the time I would have complained like crazy).
But things were going well enough so that I expected to get a promotion at work that would have made my job secure, and I had hoped then to go part-time so I could have another baby (my husband and I have always wanted two kids).
About 4 years ago I started having increased fatigue and cognitive problems, and I began to fall behind at home and at work. My then-neurologist put me on Ritalin, 5 mg twice a day, and then after a year 10 mg twice a day. It was like a miracle—I was able to catch up and then some.
I have had a few relapses, and one severe one in Fall 2011. I experienced the MS hug for the first time, and I began to have bladder and bowel problems, and I began to use a cane and then a wheelchair. It turned out I had a spinal cord lesion at C5. I was very lucky, and I recovered from the relapse, and with rest and PT I was able to walk on my own again after 4 months, and I got back on the 10 mg twice a day of Ritalin and continued at my former pace.
The story gets complicated here. I changed neurologists and treatments (from Betaseron to Tysabri)) after my Fall 2011 relapse, and Tysabri did not work out well for me, unfortunately. I was on it for six months and I got an infection every month, and I ended up hospitalized with a staph infection. When I got out of the hospital my neurologist took me off Tysbabri and I went back to work right away, but the 10 mg of Ritalin twice a day was no longer enough.
My neurologist then raised it to the maximum, 60 a day, in September 2012, and I was able to work, but I was jittery and I started having trouble sleeping at night and all my symptoms worsened. By February 2013 even with the high dose of Ritalin I was just too tired and in too much pain and too confused to keep working.
I switched neurologists again and my new neurologist put me on medical leave and on a break from Ritalin. I also began seeing a therapist and started an anti-depressant because for the first time since I was diagnosed with MS I found myself having a sense of hopelessness—if I can’t return to work in August I will lose my job.
I am 39 (it happened so fast!) and my husband and I are facing the fact that we probably won’t be able to have another child. The anti-depressant and my therapist have helped me so much—even though I feel fear and sadness it doesn’t possess me any more, and I am able to take joy in my sweet family and friends and my cat and the health I have.
So obviously I have lots of issues, and I am sorry for that long history. But it all leads up to this problem:
I am still plagued by fatigue. I know all of us are, and I feel silly complaining. But every single day I get hit with it, and about half the time it is so severe I have trouble even understanding how to complete an action. I will need to pick up my daughter from kindergarten, for example, and I will start to get ready but I will end up just going from room to room and I won’t be able to remember where I put her juice box or where I just put my keys or I will head out the door and realize I’ve forgotten my purse (if I have the juice box and keys).
My eyes start to droop and my vision starts to blur and I am worried about driving. This is just one example, but it is debilitating, and scary, and I am always calculating if I can manage to do something like go grocery shopping because what if it hits me while I am there?
I went back to my neurologist and told him about this, and he put me back on Ritalin, now at 40 a day, but it does not work any more. I went back again and asked if there was anything else, and he said that if I had trouble with fatigue Ritalin nothing was as strong as Ritalin.
So what I wanted to ask all of you is: Is this true? I keep thinking there may be something else out there for me, something, but I am stymied. I have another appointment with ANOTHER neurologist on June 3, but I wanted to go in this time with information from people with MS who can understand.
Can you help? Do any of you take medication for fatigue that you can recommend? Have any of you experienced a poop-out from an anti-fatigue medication and changed to another and have it work? I don’t expect to ever be fatigue-free, but I want so much to function better than I do, for my daughter and husband and maybe in the hopes of returning to my job.
Please let me know if you have any advice for me. I will be very grateful. And thank you so much for being there and for listening.
Emily (So sorry this is long. This is brief for me! My original one was 4 pages!).
And should I move this to the treatments category? I don't want to confuse anyone by mixing up protocol).
Thank you again, and I am looking so forward to meeting you all and talking with you--if I can stay awake long enough.
My name is Emily, and I have been reading posts here for awhile now, and wanting very much to post, but I was afraid—every time I started to introduce myself I would end up pouring out my heart, and I would get embarrassed.
So I promised myself I would try to brief and not too emotional.
I am 39 years old and I was diagnosed with relapsing remitting MS almost 8 years ago. I am married and I have a five year old daughter and up until this year I worked full time. I have never been symptom free since my first relapse, but for the most part the symptoms were liveable (even though if you’d asked me at the time I would have complained like crazy).
But things were going well enough so that I expected to get a promotion at work that would have made my job secure, and I had hoped then to go part-time so I could have another baby (my husband and I have always wanted two kids).
About 4 years ago I started having increased fatigue and cognitive problems, and I began to fall behind at home and at work. My then-neurologist put me on Ritalin, 5 mg twice a day, and then after a year 10 mg twice a day. It was like a miracle—I was able to catch up and then some.
I have had a few relapses, and one severe one in Fall 2011. I experienced the MS hug for the first time, and I began to have bladder and bowel problems, and I began to use a cane and then a wheelchair. It turned out I had a spinal cord lesion at C5. I was very lucky, and I recovered from the relapse, and with rest and PT I was able to walk on my own again after 4 months, and I got back on the 10 mg twice a day of Ritalin and continued at my former pace.
The story gets complicated here. I changed neurologists and treatments (from Betaseron to Tysabri)) after my Fall 2011 relapse, and Tysabri did not work out well for me, unfortunately. I was on it for six months and I got an infection every month, and I ended up hospitalized with a staph infection. When I got out of the hospital my neurologist took me off Tysbabri and I went back to work right away, but the 10 mg of Ritalin twice a day was no longer enough.
My neurologist then raised it to the maximum, 60 a day, in September 2012, and I was able to work, but I was jittery and I started having trouble sleeping at night and all my symptoms worsened. By February 2013 even with the high dose of Ritalin I was just too tired and in too much pain and too confused to keep working.
I switched neurologists again and my new neurologist put me on medical leave and on a break from Ritalin. I also began seeing a therapist and started an anti-depressant because for the first time since I was diagnosed with MS I found myself having a sense of hopelessness—if I can’t return to work in August I will lose my job.
I am 39 (it happened so fast!) and my husband and I are facing the fact that we probably won’t be able to have another child. The anti-depressant and my therapist have helped me so much—even though I feel fear and sadness it doesn’t possess me any more, and I am able to take joy in my sweet family and friends and my cat and the health I have.
So obviously I have lots of issues, and I am sorry for that long history. But it all leads up to this problem:
I am still plagued by fatigue. I know all of us are, and I feel silly complaining. But every single day I get hit with it, and about half the time it is so severe I have trouble even understanding how to complete an action. I will need to pick up my daughter from kindergarten, for example, and I will start to get ready but I will end up just going from room to room and I won’t be able to remember where I put her juice box or where I just put my keys or I will head out the door and realize I’ve forgotten my purse (if I have the juice box and keys).
My eyes start to droop and my vision starts to blur and I am worried about driving. This is just one example, but it is debilitating, and scary, and I am always calculating if I can manage to do something like go grocery shopping because what if it hits me while I am there?
I went back to my neurologist and told him about this, and he put me back on Ritalin, now at 40 a day, but it does not work any more. I went back again and asked if there was anything else, and he said that if I had trouble with fatigue Ritalin nothing was as strong as Ritalin.
So what I wanted to ask all of you is: Is this true? I keep thinking there may be something else out there for me, something, but I am stymied. I have another appointment with ANOTHER neurologist on June 3, but I wanted to go in this time with information from people with MS who can understand.
Can you help? Do any of you take medication for fatigue that you can recommend? Have any of you experienced a poop-out from an anti-fatigue medication and changed to another and have it work? I don’t expect to ever be fatigue-free, but I want so much to function better than I do, for my daughter and husband and maybe in the hopes of returning to my job.
Please let me know if you have any advice for me. I will be very grateful. And thank you so much for being there and for listening.
Emily (So sorry this is long. This is brief for me! My original one was 4 pages!).
And should I move this to the treatments category? I don't want to confuse anyone by mixing up protocol).
Thank you again, and I am looking so forward to meeting you all and talking with you--if I can stay awake long enough.
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