I don’t post very often but I rely on MSworld a whole lot to help me deal with MS. I apologize for the long post here but I feel the need to get it off my chest and I really do value and appreciate the thoughts and opinions of fellow MSers. My husband and family are really good but I try to minimize to them what I’m really feeling. That is how I deal with having MS and it works for me.
Having been dx for over 20 years, it appears I have accumulated over 40 lesions on the brain (too many to count) and at least 3 on the spinal cord. Over the last several years, there have been no changes according to MRI results; however I do have relapse’s every couple of years.
My symptoms are classic: Fatigue, numbness, imbalance, weakness, cognitive difficulties and bladder and bowel problems. I’m told these symptoms are a manifestation of the heavy burden of lesions. Otherwise I am healthy; good diet, weight etc. No one can tell I have MS just by looking at me. However, I feel unwell pretty much all the time. I don’t have the motivation or energy to exercise. I work part-time and when I get home in the afternoon I completely crash for hours before getting up to resume my day.
I’ve had the same neurologist for 20 years but he has now passed away. I’ve been looking for someone to replace him with no luck. Yesterday I seen a new guy and he seem quite knowledgeable. He told me pretty much the same as the others; I need to be on a DMD. He reminded me that any relapse could be detrimental. I realize this but I don’t feel like I have too many options. I have not been on a DMD in over two years, just managing symptoms. I was on Avonex for 6 years – can’t deal with flu symptoms for 5/7 days a week. I do not do will with any interferon drugs so that rules out Rebif, Beta Interferon etc. Then I tried, copaxone for six years - can’t handle the pain, lumps needles… I am absolutely done with any injectables.
I feel that my only options are Tysabri, or Gilenya and both terrify me. My other option is to not do anything and wait and see. If a relapse were to come on my neurologist said I should be put on steroids immediately; within 24 hours to prevent “disaster”! This too is terrifying!
My question to you is what would you do? Any thoughts or advice would be greatly appreciated.
Thank you.
Having been dx for over 20 years, it appears I have accumulated over 40 lesions on the brain (too many to count) and at least 3 on the spinal cord. Over the last several years, there have been no changes according to MRI results; however I do have relapse’s every couple of years.
My symptoms are classic: Fatigue, numbness, imbalance, weakness, cognitive difficulties and bladder and bowel problems. I’m told these symptoms are a manifestation of the heavy burden of lesions. Otherwise I am healthy; good diet, weight etc. No one can tell I have MS just by looking at me. However, I feel unwell pretty much all the time. I don’t have the motivation or energy to exercise. I work part-time and when I get home in the afternoon I completely crash for hours before getting up to resume my day.
I’ve had the same neurologist for 20 years but he has now passed away. I’ve been looking for someone to replace him with no luck. Yesterday I seen a new guy and he seem quite knowledgeable. He told me pretty much the same as the others; I need to be on a DMD. He reminded me that any relapse could be detrimental. I realize this but I don’t feel like I have too many options. I have not been on a DMD in over two years, just managing symptoms. I was on Avonex for 6 years – can’t deal with flu symptoms for 5/7 days a week. I do not do will with any interferon drugs so that rules out Rebif, Beta Interferon etc. Then I tried, copaxone for six years - can’t handle the pain, lumps needles… I am absolutely done with any injectables.
I feel that my only options are Tysabri, or Gilenya and both terrify me. My other option is to not do anything and wait and see. If a relapse were to come on my neurologist said I should be put on steroids immediately; within 24 hours to prevent “disaster”! This too is terrifying!
My question to you is what would you do? Any thoughts or advice would be greatly appreciated.
Thank you.
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