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Multiple Sclerosis Message Board


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Hi Jaymacky,
im sorry you were recently dx and that you are going through this. BUT yes, I have some positive words and a positive story for you!

I was dx almost 10 years ago. When I was dx, I had over 50 lesions- all of my brain and brainstem. I was getting my first bachelor degree, raising 3 kids and was completely overwhelmed. Back then, I didnt have a clue what MS was or what it meant. I was actually terrified. I was in my 30s.

I started to learn everything there was to learn about the disease- decided to trust my neurologist, who is "the guy to see" in my area when you have MS. And against my families wishes, stayed in school and continued working.

I managed to get not only a double B.S. degree, but continue on to get my MBA (all with honors). I also changed jobs, started my first management position and learned how to best take care of myself and my disease. I learned about my triggers, heat, not getting enough sleep, staying hydrated and learning how to eliminate big stress. ( I started working out 3-4 times a week which really helps).

Fast forward 9 years. Im now management in my company. I am writing my dissertation for my post graduate degree. I now have over 100 lesions and have tried 7 different DMDs, none of which I can tolerate for more than a few months before I build up antibodies to them- Im also teaching college level courses online. My job has me traveling both nationally and internatioinally and I spend at least 10 days a month far away from my family and support system. I dont have any symptoms 90% of the time and the ones which do show up are old symptoms usually triggered by me not taking care of myself, or not getting enough sleep. I aim for 8 hours a night.
I am not disabled in any way- I manage my disease by myself, no one at my job even knows about it- and when things are going badly, I fake it!

MS doesnt have to come between you and your career; nor does it have to change your "wants" for your future. You dont have to disclose it to anyone and you dont have to have people looking over your shoulder waiting for something to happen to you. Its really mind over matter. You work with it and you take care of yourself and do the very best you can. People will see what you want them to see. Nothing more. I do advise against disclosing to anyone whom it is not critically important to tell. Having done that in my past, I can tell you that it wasnt a good experience for me. People were always watching over my shoulder to see what would happen next. If you dont give them any ammunition, they cant do that. I also truly advocate that you find a doctor you can trust to manage your disease for you. Look for someone who is either an MS specialist, or someone who treats 50 MS patients a week- any other neurologist isnt going to be savvy enough to know how to be on your side or help you through this process. The first year is actually the hardest. Once you get through it, youll find that you get a much better handle on both what you can and cant attempt, but also what is normal for your disease.

i wish you only the best, Congratulations on finishing your degree! And come back here often with questions and for support. We have all been where you are...

MSNik
I will reiterate what Jayhawk and Niki said in that number of lesions is less important than where they are located. You have forty lesions and feel well, so that's proof that number isn't that important!

I have many brain lesions but the only seemingly sumptomatoc ones are two that are at T12-L1 on my spine. Little buggers they are. They took my gait and my bladder control. Of course the brain ones may become symtomatic but for now they're ok.

Sorry that you have this Dx though. I remember when I got my Dx and how upset I was. Allow yourself to be upset and feel what you need to feel. We are resilient creatures though and you will be ok. Is your neuro talking to you about disease modifiers?





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