It's All Falling Apart
Newly Diagnosed December 2018 so not on any medication besides the prednisone to help with the inflammation but almost done with that. I was hoping that I would be started on a medication by the end of this script but now it's not looking like that will be and I'm getting worried. I have been reaching out to the cardiologist office who is to oversee the first dose observation of Gylenia but they won't return my calls. It's been 7 days, granted only 3 days may have been working days with the holiday. Also, I had an appointment to see an ms specialist scheduled for next Monday but her office call to reschedule since the specialist was not going to be in that. Plus I have these (for lack of better way to describe it) tremors in my hands and arms where it's like my nerves "got cold". Idk and this symptom is new. Could it all be related to this relapse or is it progressing?
You were just diagnosed and nothing seems to happen at this time of year because everyone is taking leave. Try to take a deep breath. I know symptoms are scary but there’s not much that can be done about mild symptoms. Keep working to get in with your MS Specialist. Honestly, it seems weird to me that you would do your first dose of a medication at a cardiologist’s office. How familiar will they be with reactions to DMTs? I saw you’re in the US. I’m seen at a neurology practice that has its own infusion center and two nurses who are specifically responsible for dealing with medication administration and insurance issues. I’m not sure how rural it is in your area but if your MS specialist isn’t set up to administer medication then you may want to see if there any other neurologists specializing in MS in your area. It won’t be an issue with gilenya, but some of the infusion medication require the office to be registered and approved to administer medications by the pharmaceutical companies. Good luck. I know adjusting to an MS diagnosis is a bit scary.
@me1123 Sorry to hear you have all this stress and worry. This is the worst time of year to be trying to get people to ring back. As others have said stress makes your Ms worse so try not to stress about it. I know that’s really hard but I find lying down and taking deep breaths while concentrating on my in breath and out breath helps me to relax. When you take your first Gilenya tablet you need to be monitored as your heart rate can drop. That’s probably why the cardiologist office is doing it. When I started I had a nurse from the drug company observing me in the neurology department. My heart rate dropped a bit so I had to stay there longer than expected until it came back up. Thankfully it did as if it didn’t they would have kept me overnight. It’s just that they take it very seriously. Every hospital is different so maybe they do not have a nurse available in your area. The most important thing is that you will be monitored. Hopefully the cardiologist office will be back to normal soon and you get your appointment. X