Hi Friends-I have not posted in a little while and wanted to share something that happened.
I was in the hospital for 6 days last week-not fun. I had a severe relapse this time which affected my walking, talking, leg strength, and had numbness on right side of body and tightness in my face. I was very weak not just in my legs but all over. I got 3 days of solumedrol IV infusion while at the hospital then started a tapering steroid tablet pack. After one day of solumedrol infusion, I already noticed a difference.
I thought when I was in the hospital "how the heck did I end up here? Very scary! But there was hope too.
My speech was affected this time cuz it was hard to articulate my thoughts or words and I would get extremely frustrated. This improved a lot after 1-2 days at the hospital, but the physical and mental fatigue did not help this situation. Geesh!
Over the course of 3 weeks or so, the fatigue got more extreme and right side numbness was creeping in. The numbness I feel normally is like someone has put blood pressure cuffs around my arm, foot and leg and pumped it up. It is a weird sensation; however; I still feel touch in the areas.
The first two days in the hospital was like learning how to walk again. With the aid of the nurse, I slowly shuffled to the bathroom with a walker and had a lot of body soreness & spasticity all over. Then 2 days later, I was determined to walk down the hallway without the walker and put my hand on the railing as support when needed so that worked well. I waved to the nurses as I walked by...ha! But talking about baby steps-this sure was!
Then the last few days at the hospital, I felt stronger and could walk very slowly without a walker at times. When I got home I used a cane around the house for the next several days and still do at times. I have been resting a lot since I have been home and it has been very hard on my family to see me like this especially my 9 year old son. I don't like it, but I know it is part of the recovery process. They are used to seeing me lie down everyday anyway because of fatigue, but this is extreme.
I have had many relapses the past 1 1/2 years (5 relapses) but the other ones except one relapse a year ago were milder when I was on the medicine and I have never been hospitalized for MS-just ER visits before.
I believe the culprit was being taken off my MS medicine a few weeks back to do a 30 day cleanse before I go on Tysabri infusion early April. I think the relapse was brewing at that time anyway and going off of the meds just made everything worse. I don't blame the doctor, but I know I just need to clear my system out so I understand that.
I am walking again now slowly, but still do not have full strength in my legs. They get weak very quickly at times. And I know I better sit down or lie down before I fall down. I hope that improves soon.
I have RRMS-diagnosed in Nov 2013 but doc thinks I had MS already a few years before because of eye issues and fatigue.
Well, I will keep you posted on the progress of this and hopefully it can help anyone who has struggled with a lot of relapses or when you feel like you have just hit "rock bottom" with MS because I sure felt that way and still do at times.
Take care-Nikki
I was in the hospital for 6 days last week-not fun. I had a severe relapse this time which affected my walking, talking, leg strength, and had numbness on right side of body and tightness in my face. I was very weak not just in my legs but all over. I got 3 days of solumedrol IV infusion while at the hospital then started a tapering steroid tablet pack. After one day of solumedrol infusion, I already noticed a difference.
I thought when I was in the hospital "how the heck did I end up here? Very scary! But there was hope too.
My speech was affected this time cuz it was hard to articulate my thoughts or words and I would get extremely frustrated. This improved a lot after 1-2 days at the hospital, but the physical and mental fatigue did not help this situation. Geesh!
Over the course of 3 weeks or so, the fatigue got more extreme and right side numbness was creeping in. The numbness I feel normally is like someone has put blood pressure cuffs around my arm, foot and leg and pumped it up. It is a weird sensation; however; I still feel touch in the areas.
The first two days in the hospital was like learning how to walk again. With the aid of the nurse, I slowly shuffled to the bathroom with a walker and had a lot of body soreness & spasticity all over. Then 2 days later, I was determined to walk down the hallway without the walker and put my hand on the railing as support when needed so that worked well. I waved to the nurses as I walked by...ha! But talking about baby steps-this sure was!
Then the last few days at the hospital, I felt stronger and could walk very slowly without a walker at times. When I got home I used a cane around the house for the next several days and still do at times. I have been resting a lot since I have been home and it has been very hard on my family to see me like this especially my 9 year old son. I don't like it, but I know it is part of the recovery process. They are used to seeing me lie down everyday anyway because of fatigue, but this is extreme.
I have had many relapses the past 1 1/2 years (5 relapses) but the other ones except one relapse a year ago were milder when I was on the medicine and I have never been hospitalized for MS-just ER visits before.
I believe the culprit was being taken off my MS medicine a few weeks back to do a 30 day cleanse before I go on Tysabri infusion early April. I think the relapse was brewing at that time anyway and going off of the meds just made everything worse. I don't blame the doctor, but I know I just need to clear my system out so I understand that.
I am walking again now slowly, but still do not have full strength in my legs. They get weak very quickly at times. And I know I better sit down or lie down before I fall down. I hope that improves soon.
I have RRMS-diagnosed in Nov 2013 but doc thinks I had MS already a few years before because of eye issues and fatigue.
Well, I will keep you posted on the progress of this and hopefully it can help anyone who has struggled with a lot of relapses or when you feel like you have just hit "rock bottom" with MS because I sure felt that way and still do at times.
Take care-Nikki
Comment