Just got definitive diagnosis yesterday. Im scared and dont know what to expect. Im having numbness, weakness, fatigue, electric shocks, and periods of slurred speech. I go to the neurologist tomorrow, What should I expect. How should I prepare?
First take a deep breath it is so overwhelming in the beginning. I was diagnosed in 2004 and really genuinely nknew nothing about MS. I just had my own uninformed ideas and pictures in my mind of what my future might be. So far for me and as you will learn everyone’s journey is different, none of those early worries have become my reality. This not to say they won’t. The amount information you will be bombarded with with will seem incredulous....breathe. Eventually in seems to sink in and you learn to listen and understand your body and how it copes. Ask a ton of questions and understand the answers so you are not reacting but rather have some control by being informed. As others have mentioned there is no crystal ball and no doubt there are challenges a you are already experiencing. Be sure to try and surround yourself with few who get it, MS is difficult for lots of would be helpful people to understand because it is not always obvious. This group has been invaluable to me. While not always posting Ihave spent time reading others experiences and often found others who have been able to articulate exactly what I have been feeling but haven’tfound the right words. This has really helped me to remind me I am not alone in this journey. There is a ton of support and a genuine sense of caring. Breathe🙂
@A MyMSTeam Member You've got some great advice from the above folks! Try not to worry too much - it does get better and less scary! I've been diagnosed just over 2 years now, and yes, it was super scary at first, but I'm doing ok with it now. I've actually been putting together some resources to share with newly diagnosed folks - happy to send it your way if that would be helpful! My email address is (Email address can only be seen by the question and answer creators) Glad you've found your way to this site. It's been tremendously helpful for me and I hope the same will be true for you. Hang in there!! XX
(I'm assuming you have a definite diagnosis because of the MRI.)
https://www.nationalmssociety.org/Treating-MS/M...
Here are 2 common MS medications. I'm on Tysabri but I doubt it will be option for you since they seem to like to hold off on the semi-experimental stuff until things get bad. I would look at the %'s of it working when making your choice. I would also look at the possible side effects.
https://www.tecfidera.com/en_us/home/about/over...
https://www.copaxone.com/about-copaxone/copaxon...
What to expect? The problem with MS it it varies so much. Person to person, attack to attack... they are all unique. You might as well shake a crystal ball. I can tell you that you need a good neurologist (preferably one that specializes in MS), you need a disease modifying drug & that you may want to have this attack treated with steroids. Oh I would also start saving copies of your medical records. Trust me it comes in handy. Now is a good time to start researching MS medications & to pick your top 3. Then ask your neurologist which one they recommend & why. If the first MS medication doesn't work for you, don't panic. There are others you can try. Also the needles for Copaxone are small and the auto injector is easy to use. If you have any questions do not hesitate to ask us or your Dr.
I would never recommend Avonex (?27%) it's % is low. Copaxone (?36%) or an pill (like tecfidera) because those tend to run about a 40% chance of preventing future MS attacks. Besides I tried Avonex for 1 month when I was first diagnosed (before auto injectors) that needle was huge! Plus it made me feel like I had a flu for 3 days after injecting.