When I got diagnosed, I was scared out of my wits. I live in Red Bank, NJ, but got diagnosed from an MS Center in Northern NJ (after my doctors down here completely dismissed all of my symptoms). The MS Center also gave me Dana Vigilante's name, a woman the same age as me (42), who also has MS. This was the absolute best thing that they could've done and I strongly suggest anyone else newly diagnosed to ask their MS Center for the name(s) of others in their age group who have MS as well. I spoke with Dana on the phone, and we met the next day and I still can't believe she actualy has MS!! She is very pretty, very intelligent and compassionate, drives a little sports car convertible and lives a completely "normal" life. Yes, she has symptoms not seen with the eye, but she is an example that MS Isn't a nightmare. I'm not sure what I would've done had I not been given her name. SHe is a lifesaver. So please ask your MS Center to give you the name of someone who is in the same boat as you are!!!!
I was diagnosed in Columbia Presbaterian eight years ago and had the usual discussion with the doctor and his nurse about treatment options . I then left with two info packs and went back to work because the job I was on had to be finished that week.
BTW I had met someone , who has MS while the diagnosis process was ongoing and she was a big help with a lot of the decisions.
Anyhow I hadn't even thought of this in a long while so I just thought I'd share.
I was diagnosed at the Saint Barnabas Multiple Sclerosis Center in Livingston, NJ in June of last year and they also gave me Dana Vigilante's phone number and I called her that night and she spoke with me for two hours!! And we met later that week and I really felt so much better as well, because to be honest the MS diagnosis scared the life out of me, but Dana has had it for years and she is definitely living a good life. ALL MS Centers should implement an advocate for newly diagnosed patients. It's easy to sit and listen to what a doctor (who DOESNT have MS), has to say, but it is 100% better to sit with someone else who has the disease and learn more about it. I just felt alot better about getting this crappy disease after speaking with Dana. The first thing that came into my mind when I heard MS was Annette Funicello and RIchard Pryor. I'm very grateful for Ms. Vigilante and her kindness.
I too was referred to Dana Vigilante after my diagnosis at the MS Center and she was extraordinarily kind, funny and compassionate. Although I had had symptoms for years, I was still in shock, and very uneducated about MS when I got my diagnosis. The Center is awesome, but to be honest, the doctors don't exactly sit there with you after diagnosing you and answer your questions for the next two hours. Having Dana VIgilante to speak to was, in essence, a lifesaver. All of our symptoms are different, but meeting Dana (which she set up the day after we spoke), was just very enlightening. I don't know what my journey has in store for me with my symptoms, but just knowing there is someone like Dana out there to speak to, has made me feel so much better. I think patient advocates should be mandatory in hospitals. And I strongly advise anyone newly diagnosed to reach out for someone your age who has the same diagnosis as you.
I am glad to hear that you had someone with whom you could share your MS with. I do not live in NJ I am in California and we have an MS Center which at the time I did not know about. I do know that having someone who has MS to talk to is very important especially when you are newly diagnosed. Hospitals should all have some form of Patient advocacy.
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