I am newly diagnosed (8/11) and as such feel that it is the responsibility of my neurologist to ensure that I have a good understanding of this disease and what to expect. It frustrates me when I deal with things or have questions, and I call and leave a message for the nurse to call me back and no one gets back to me until 2 to 3 days later.
For instance, I had a very scary situation on last night where after getting very nauseated, sick to my stomach and getting very hot, my hands actually 'locked up' on me. I had my fist balled up at the time and I could not open them! Before they locked up I felt the tingling sensations speeding up and spreading up and down my arms right before they locked up on me. I called for my husband who came and rubbed them and basically pried them open and continued to rub them and comfort me until I cooled down and they were better.
I'm NEW to this I needed my doc to tell me is this normal. I was suppose to do Achthar gel injections for 5 days to deal with my tingles throughout my body but the medication company has been unable to get what it needs from the doctor office to complete the order! When I see him in person, he is great, thorough, and was the one that captured things that other physicians missed. When I have questions, I feel like I'm being a bother and I hate to call. This is MY LIFE I feel like they are not taking serious and I don't know what I need to do
Thanks for listening
***Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.***
For instance, I had a very scary situation on last night where after getting very nauseated, sick to my stomach and getting very hot, my hands actually 'locked up' on me. I had my fist balled up at the time and I could not open them! Before they locked up I felt the tingling sensations speeding up and spreading up and down my arms right before they locked up on me. I called for my husband who came and rubbed them and basically pried them open and continued to rub them and comfort me until I cooled down and they were better.
I'm NEW to this I needed my doc to tell me is this normal. I was suppose to do Achthar gel injections for 5 days to deal with my tingles throughout my body but the medication company has been unable to get what it needs from the doctor office to complete the order! When I see him in person, he is great, thorough, and was the one that captured things that other physicians missed. When I have questions, I feel like I'm being a bother and I hate to call. This is MY LIFE I feel like they are not taking serious and I don't know what I need to do
Thanks for listening
***Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.***
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