Hi all-its been many years since I have been on the forum-but need to get some feedback from people that have "been there and done that" I have the relapsing form and have been very blessed since starting on Tecfidera approx. 3 years ago of no relapses since that time.
This week I was diagnosed with Shingles. I knew the week before the rash started that "something was up" because I was exhausted, achey, headache, and almost typical flulike symptoms. I have chronic chest wall weakness and neck due to the areas of my lesions-and this was REALLY exacerbated. So I am 48 hours on the Acyclovir. Went to the GP for that.
Contacted Neuro and was told to stop the Tecfidera. (Scary SCARY-but understand the rationale for doing so) Up until this am I was still having new rash areas breaking out but seems to have slowed down. My lesions are the worst on my back-around my bra line area and then extend up to my shoulder. I also have them on the front of my chest and down my arm.
I have tenderness pretty much anytime anything touches my arms- I am guessing where that nerve runs down the arm? Does that sound reasonable even tho there is no rash in some of those areas.? Also this afternoon I am developing that same deep "bruised" like feeling in my waist when I lay on it and that hip down that side and back of my leg. Is it normal for the ENTIRE side of the body that is affected to be involved?? I thought it was a certain level that typically caused a line of discomfort.
I kid you not, I am uncomfortable from the right side of my face-just beside my ear-all the way down to above my Right Knee. And it is compounded 100 fold by the headache, flulike achiness, major, major fatigue and now the blister formations of the rash-I'm really not sure which is worse the rash or the flulike achiness and muscle weakness. Is this a typical Shingles outbreak for a MS patient? Would I even recognize a relapse if it were to occur?
Please share your experiences if you have had shingles while having MS and any suggestions on how to get thru this would be greatly appreciated... Thanks so much! Elliebelle
** 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. **
This week I was diagnosed with Shingles. I knew the week before the rash started that "something was up" because I was exhausted, achey, headache, and almost typical flulike symptoms. I have chronic chest wall weakness and neck due to the areas of my lesions-and this was REALLY exacerbated. So I am 48 hours on the Acyclovir. Went to the GP for that.
Contacted Neuro and was told to stop the Tecfidera. (Scary SCARY-but understand the rationale for doing so) Up until this am I was still having new rash areas breaking out but seems to have slowed down. My lesions are the worst on my back-around my bra line area and then extend up to my shoulder. I also have them on the front of my chest and down my arm.
I have tenderness pretty much anytime anything touches my arms- I am guessing where that nerve runs down the arm? Does that sound reasonable even tho there is no rash in some of those areas.? Also this afternoon I am developing that same deep "bruised" like feeling in my waist when I lay on it and that hip down that side and back of my leg. Is it normal for the ENTIRE side of the body that is affected to be involved?? I thought it was a certain level that typically caused a line of discomfort.
I kid you not, I am uncomfortable from the right side of my face-just beside my ear-all the way down to above my Right Knee. And it is compounded 100 fold by the headache, flulike achiness, major, major fatigue and now the blister formations of the rash-I'm really not sure which is worse the rash or the flulike achiness and muscle weakness. Is this a typical Shingles outbreak for a MS patient? Would I even recognize a relapse if it were to occur?
Please share your experiences if you have had shingles while having MS and any suggestions on how to get thru this would be greatly appreciated... Thanks so much! Elliebelle
** 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. **
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