I was just diagnosed on valentines day, and I am feeling completely overwhelmed and so alone in this journey.
I am 37 years old, have three kids, 16, 3.5 and 1. I have been living in Jakarta Indonesia for the last two years for my husbands job. Two months ago I had the perfect life, feeling great then went to bed and woke up with my left side numb from my chin all the way down to my toes. I ignored it the first day but when it got worse I thought the worst, a stroke or brain tumor. Medical care here in Jakarta is lacking and i needed to get to Songapore to see a neurologist but it took two days to get clearance to fly after CAT scan to show no stroke and to get an appointment with a neuro.
I was on my way to Singapore waiting in a line at the airport when all of the sudden I could barely stand up anymore and I had severe double and blurry vision. With my husbands support we finally made it to the doctor in Singapore. As you probably know the closer you are to the equator the less common MS is. Well I fly over the equator on the hour flight from Jakarta to Singapore which means MS is almost none existant here. After my consultation with the doctor he suspected MS and admitted me to the hospital for MRI.
MRI results come back showing 11 lesions, 3 of which were active. Over night my world was crumbling. I was so scared, confused, overwhelmed, relieved it wasn't terminal, mad, in shock. At this point I couldn't see, couldn't move my left foot, had the ms hug, my entire left side muscles were tight and stiff, I couldn't pick up my baby, had to stop feeding him and give him a bottle and formula for the first time in his 10.5 months. I was given IV steroids for four days and then went home to Jakarta.
Today, two months later I have recovered from this attack about 85%. I finally found a good neuro in Singapore who specializes in MS and treats actual MS patients. I am coming back to Texas this summer and will see an MS specialist while there. I have been taking rebif for four weeks now. I was finally feeling like things were going to be ok but the last two days I haven't been able to stop crying.
I have an amazing, supportive husband and incredible friends supporting me here but I feel so alone from the MS stand point. I do not know anybody who has it, I can't talk to anyone who truly understands what I am going through. I have so many questions like what helps with the extreme fatigue? Should I stop exercising if my numbness temporarily gets worse? Will the bruising from the rebif shots ever get better? Just to name a few
I am sorry this is so long and if you made it to the end thanks for listening. As I sit here with tears streaming down my face it does feel a little better after "talking" about it.
I am 37 years old, have three kids, 16, 3.5 and 1. I have been living in Jakarta Indonesia for the last two years for my husbands job. Two months ago I had the perfect life, feeling great then went to bed and woke up with my left side numb from my chin all the way down to my toes. I ignored it the first day but when it got worse I thought the worst, a stroke or brain tumor. Medical care here in Jakarta is lacking and i needed to get to Songapore to see a neurologist but it took two days to get clearance to fly after CAT scan to show no stroke and to get an appointment with a neuro.
I was on my way to Singapore waiting in a line at the airport when all of the sudden I could barely stand up anymore and I had severe double and blurry vision. With my husbands support we finally made it to the doctor in Singapore. As you probably know the closer you are to the equator the less common MS is. Well I fly over the equator on the hour flight from Jakarta to Singapore which means MS is almost none existant here. After my consultation with the doctor he suspected MS and admitted me to the hospital for MRI.
MRI results come back showing 11 lesions, 3 of which were active. Over night my world was crumbling. I was so scared, confused, overwhelmed, relieved it wasn't terminal, mad, in shock. At this point I couldn't see, couldn't move my left foot, had the ms hug, my entire left side muscles were tight and stiff, I couldn't pick up my baby, had to stop feeding him and give him a bottle and formula for the first time in his 10.5 months. I was given IV steroids for four days and then went home to Jakarta.
Today, two months later I have recovered from this attack about 85%. I finally found a good neuro in Singapore who specializes in MS and treats actual MS patients. I am coming back to Texas this summer and will see an MS specialist while there. I have been taking rebif for four weeks now. I was finally feeling like things were going to be ok but the last two days I haven't been able to stop crying.
I have an amazing, supportive husband and incredible friends supporting me here but I feel so alone from the MS stand point. I do not know anybody who has it, I can't talk to anyone who truly understands what I am going through. I have so many questions like what helps with the extreme fatigue? Should I stop exercising if my numbness temporarily gets worse? Will the bruising from the rebif shots ever get better? Just to name a few
I am sorry this is so long and if you made it to the end thanks for listening. As I sit here with tears streaming down my face it does feel a little better after "talking" about it.
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