Multiple Sclerosis

[kimon24]

My daughter got the results from her MRI today. There is plaque on the MRI in the neck area and also on her spine. We got the report from our G.P. which tell us that it is looking like MS and we should see a neurologist again immediately. How is it determined if you have relapsing remitting, primary progressive, secondary, or progressive relapsing. Is it determined by the locations of these lesions or do they strictly go by the symtoms you are having. I have a friend whose lesions are strictly on the brain. Now my daughters brain MRI was fine but the C-Spine MRI showed her lesions. Does that determine anything? Just trying to make sense of all this new information. My daughter is only 17 and she has been having symptoms for several months already. If anyone can give us any info at this point it would be helpful. It will take a couple weeks to see the neurologist and we are very nervous. Thanks to anyone that can shed some light on this for us.

[ShootingStar]

Be sure and write down ANY questions you might have, they tend to go right out of your head when you're at the Dr.'s office. Also write down the symptoms, how long they lasted, when they started etc. because you will be asked. Even things that you don't think are related might be, so write them down now.

The "kind" of MS it might be is so confusing, but that was one thing I directly asked and I got my answer (relapsing/remitting). So don't try to figure it out, the neuro will be able to tell you at the end of the visit. He has to ask lots of questions and do some fun (non painful!) tests to confirm a diagnosis.

Check into your local MS society chapter too (if you're in the US), they have informational meetings and will be happy to send you a free "newly diagnosed" info packet. Take care and do a lot of reading and research and don't let people who don't know MS personally scare you.

http://www.nationalmssociety.org/index.aspx

[kimon24]

Shootingstar- thank you for your response. People have already gotten to my daughter and her twin sister with horror stories of aunts, uncles, friends, neighbors, you name it, that have MS and are now in a wheelchair. We did get in to see the neurologist and she gave us alot of information on Rebif and Betasuron. Those are the two she likes to use the most. But the question was brought up about which type Jenn has, she went into a speech about something else. Maybe she didnt understand the question since I had a hard time myself coming up with the right words. My daughter on the olther hand is in complete denial. She wont even say the words multiple sclerosis. I dont know how to handle this. She wont cry, laugh, talk-nothing. Its getting worrisome. Especially for her twin, who she has completely shut out. Not sure what to do. Any more ideas for me. Thanks for your help. Kim

[ShootingStar]

Hi Kim, I'm a Kim too :)
I really don't know what to tell you regarding your teenagers troubles, I am 44 and just diagnosed on April 10th and will be taking Rebif. I do know that my local MS chapter has support meetings specifically for teens, so again I would contact your chapter. Also try other MS forums like msworld.org and thisisms.com they have sections for teenagers and you could ask what they are doing. Best Wishes and (((hugs))).

[kimon24]

Shootingstar- Good luck to you. My daughter will also be starting Rebif in the next couple of weeks. Hope everything goes well and keep me posted on how you are doing. Kim

[Maw121]

Hi,
Im 16 and was just diagnosed with MS a few weeks ago. The type of MS is determined mostly by your symptoms and how they occur. You cant ever be sure with MS because it is different for every person. On the national MS society website it tells you all about this- they told me at the hospital that this was the only website to go on for info.
I know how hard it can be dealing with this- trust me, me and my family went through everything you are. It was especially hard because I am so young, so I completely understand what your daughter is going through. If she wants to talk about it, feel free to post. It might be easier since I am around her age. She is truly lucky that they found it early like with me. Now with all the new medicines, she could go her entire life without another symptom. SInce they caught it early, chances are that she can live a completely normal life.

Molly

[kimon24]

Thank you for your response..I certainly hope you are feeling ok. My daughter finally started on Meds last week. She chose to go on Copaxone since there are little to no side effects but shots are every day and she is ok with that. Things seem to be going well and if you are comfortable with emailing your address to me, I think you can both use a little support from each other every now and then. My email address is [moderator note: e-mail address has been removed] I will pass your address on to Jenn. Take care of yourself and hopefully we will hear from you again

Kim

[pttkel5]

HI. I have M.S. I am just joining this group. I was diagnosed in 1998. I am so sorry to hear about your daughter. I am quite sure you are devasted as well as she. Does anyone else in your family have M.S.?

[kimon24]

Thank you for your response. I does break my heart each day when she gives herself her shot. However, she is feeling well and tolerating the shots and so far things are well. Hope things are as good for you.

Take care!!
Kim