My 16 year old daughter was diagnosed with relapsing remitting MS in fall of 2009. She woke up one day in August with numbness and tingling from her neck down. Her diagnosis process started with our family doctor who then referred us to a pediatric neurologist. After that she was sent to a MS specialist who confirmed her diagnosis (she has lesions on both her brain & c-spine). Her diagnosis happened really quickly...only took about one month. Then, she started on weekly Avonex injections last November and most of the side effects from the drug (flu like symptoms) have lessened over time. We are just trying to give her the positive support she needs to help her deal with MS as best she can. Her diagnosis was devastating for us at first... It's hard enough to be a teen and so much harder to deal with MS on top of everything else. We have tried to become better educated and suggest that it might be helpful for her to chat with other teens living with MS here on this forum. I think in time she will want to seek some sort of connection with others her age that are living with MS. She just needs to come to terms with her illness at her own pace & we need to be supportive and patient. I would love to hear from other parents who have gone through this before. I did notice there were many active posts last year from several parents who had teens with MS. Just wondering if ya'll are still around. I would love to hear from you and get an update on how your teens are doing. Thanks!
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Hello
My DD was 14 when she was dx.
All I can say is to be supportive, and get educated on MS and keep up with everything. Find a good MS dr. if you haven't already, one that will talk with you and explain things and that you trust and are comfortable with.
Let her be a teen, she will learn her limitations if she has any, like when she is tired she will need to rest. Just LOVE her and support her, that is so important.
Today is the MS walk in Wisconsin, my other 3 daughters and some friends and family have a team this year Team Ruthless, Ruth was my DD middle name and her sisters called her Ruthless sometimes, her name was Lindsey and this year we walk in her memory, tom. she would have been 29 years old, she lost her battle with MS May 7, 2009.
Lindseys MS was very aggressive from the start and not the norm.
I feel your pain and frustration with having to go through this with your daughter and wish you all the luck and support.
Nenner -
Thanks Nenner for your reply, support and encouragement. I am so sorry your daughter lost her battle w/ MS last year. I know it still must be difficult for you and your family. Thanks again for taking time to reply...It really does help to know there are other parents who I can relate to. Just knowing there are others who have been down this path before is a comfort. Blessings to you and your family.Comment
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Keep walking,etc.
20 yrs with MS, can barely walk today. PLEASE instill the importance of exercising. It is vital. Do it everyday. MS is progressing and will crept up on them.
Beware of advice from others. Do your homework, research. Just because something works for others doesn't mean it will work for you or yours.
If todays a bad day, tomorrow is another day!
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My son was dx'd in April of 2007 - if you ever need to talk or just have questions, let me know
He has also started a support group in Houston for young adults with MS.Dedra
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hi im sorry im not a parent but i am 15 and wouldnt mind chatting with your daughter about anything cos id like to learn stuff about MS. did she have a lumbar puncture? or get a diagnosis without it? she is lucky she got a quick diagnosis, ive been having tests for 9 months and they still cant give me a real answer and not a day goes by where i dont think about it all. this was posted a while ago so i hope you read this, or still visit this website. thanks
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My son is 21 and newly diagnosed
My son is 21 and we just received pretty much a diagnosis today. His first flare I will call it started back in November when he was home on Thanksgiving break from college. He woke up that morning with numbness and tingling down one arm. We thought he slept wrong or something and it would go away. By Christmas break a few weeks later, the symptoms had progressed down the left side to his upper thigh.
I started making phone calls to get him into see somebody as I knew these symptoms were concerning. We finally got in to see an orthopedist that specializes in spine as I was thinking it was something in the C-spine. Well, he was awesome and got the ball rolling. After 2 days of getting several MRI's, a third visit with him and a visit with a neurologist, we are being told the MRI is highly suggestive of MS (he has some lesions on the brain, although not many and appear to be new from November flare).
He is on steroids now and we go back next week for lumbar puncture and blood work and will go from there. I would love to hear from parents who have teens/young adult children who have also been diagnosed. I feel like I have been hit with a ton of bricks and have no idea what to expect. I am right now scared to death of what the future could have in store for us.
**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**Comment
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rgriffen, Hi
My daughter was 23(2008) when she developed symptoms. Started with numbness to left side of face thought it was bells palsy. Dr. found numbness in left arm sent her for MRI, then on to neuro. Diagnosed with another autoimmune and was put on aspirin once a day. Next year whole left side of body went numb, went to a university hospital, stayed 8 days,came out with MS dx.
She has been on rebif, now taking Copax, had another relapse in Feb., worse than other two, now in process of switching to Gilenya. Is it scary, yes. You will have all kinds of emotions, denial, the big Why question, anger, you name it you will feel it. Frustration has been the big thing for us because they don't know anything about this disease they just speculate. You can't get a straight answer to a question, cause they just don't know.
They know what it does to the brain but have no idea why. But as parents we have to be the strong ones, we have to be there for them. Although your brain will become fried, you need to read all you can about this disease and keep up with what is going on as far as research. I know this is long but I hope it has helped and not depresssed you. There are others out here that have felt what you are feeling or have felt everything your going through. Hope things go okay with his treatment.
Momma60
**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**Comment
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Been there and I feel your pain. My son was dx'd in April of 2007 at 23 and what a rollercoaster ride it has been.
Let me know if you have any questions or just need someone to talk to.
My son has now started a support group in Houston for young adults with MS.Dedra
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Help!
My son was diagnosed at the age of 13 and is now 22. He is in college FT and works PT. He lives in Austin Tx. Over the last year his fatigue has become severe... to the point that the word "disability" has crept into the conversations. He may not be able to work soon. Does anyone know of an advocate or social service agency in the area (Austin, Tx) that he could speak with??? We'd like to see if he can get any temporary assistance with rent or anything.....
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Is anyone still reading this link? My daughter was newly diagnosed and I would love to talk to other parents going thru this.Comment
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