TALK ABOUT A SMALL WORLD...

[Waydwnsouth1]

Yesterday I was getting a haircut and just as I was leaving one of the stylists called my name and told me the young girl she was cutting was just DX with MS. She asked me if I would mind talking to her. Of course I told her absolutely not I'll talk to her as long she wants.

She told me what lead to her DX and how she was doing. She said her Neuro wanted to start her on Gilenya for her first DMD, which I thought was rather odd to but that's just me. She did make a comment that led me to believe that her Neuro didn't believe MS caused pain. I told her when she saw her Neuro the next time to ask her the question straight out if she believed MS causes pain. I told her if she answers no to find another Neuro.

We had a great conversation, we talked about symptoms and she was curious about what to expect. Of course I told her o two people are a like. I also told her no two people react the same on the medications. She was really curious as to what medications I took for symptom management. I shared with her what I had taken which were the some of the same meds she was currently taking.

The one thing I noticed because it really stood out was attitude. She seemed to have a great attitude about the whole thing. I don't know if it was because it is all so new or she just has that kind of attitude.

But most importantly the best advice I gave her, I told her if she didn't do anything else you HAVE to join MSWORLD.ORG. I sang the praises of this forum and what she could learn about MS in a short period of time. I told her she could also learn how to prepare for her Neuro appointments just by reading some of the posts.

It just goes to show, the person standing in line behind you at the grocery or at the mall or at a fast food joint could have MS. It's a small world. I hope she joins and I hope she does well starting her new life with MS.

I gave her my contact information and told her if she had any questions don't hesitate to call, test or e-mail.

[hunterd]

thank you for taking so much time to explain everything! The world needs more people like you! And also, thank you very much for the good word. I hope she joins and that she gets as many answers as she has questions.

[Mamabug]

Yes; thanks for talking to her. When I was initially dx with MS, I knew nobody with MS. My only contact with MS had been 25 years earlier, when I had met, once, a woman in her 40's who was confined to bed with her MS. So, I had to educate myself. MS World and nationalmssociety.org were life-savers for me.

[TinaP303]

Waydwnsouth1

Your willingness to share info and help her just makes me feel good. Nobody should wonder & flounder. When I was first told I had MS my thought was "OK, it's got letters instead of words for a name. This can't be good. what the junk is MS?" It would have been so great to have a person-non medical professional-to talk to. Finding MSWorld (lucky chance) was the best thing for helping me learn & cope with all of this "stuff".

[KitOP]

It's amazing how other people are brought to us. I've had a similar experience. It was actually a nurse that was working with the ENT Dr that I see.

She was not newly DX'd but still wanted to talk about the MS.

Thank you for taking the time to talk with her. I'm sure you probably answered a million questions that she had floating around in her head. A little peace of mind goes a long way.

And THANK YOU for referring her to MSWorld! I really hope she comes and checks us out and discovers the wonderful people here.

[JerryD]

You did a very great service for that girl. You deserve a 'pat on the back'. If this disease is to ever have a 'cure', it has to be dragged out into the sunlight! Good job shedding some light.

[pennstater]

I am sure that your talk helped her in more ways than you can imagine. I do hope she checks the board out and reaches out you you. Eerie, can't always remember, but the ups and downs of the first 2 years are clear as day.

I also had only one reference for MS when diagnosed. She went to high school with my dad, who is now 89, and was in a wheelchair by the age of 25. This of course was before DMDs and even lots of symptom management. Understanding what I do now, I would guess she had PPMS.

I really think it helps to be able to put multiple faces on MS. It really helps to understand that everyone's course is different. Attending MS walks in the early years also helped me to see this. It reinforced to hope for the best, while planning just in case.