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Diagnosed with ms at 16
I have just been diagnosed with ms and I'm only 16yrs old.I haven't taken any of the injections yet , because my parents are unsure of it especially hearing about all the side affects. So is it better to go all natural or does the medication really help?
Hope any of this was helpful. Please, reach out, tell your parents that they can reach out, there are lots of people who care.
Ah, almost forgot.
There are camp experiences for kids with MS. The two I know about are Champ Camp, which takes place in Texas sometime in March, put on by the Pediatric MS Alliance, and in July, Teen Adventure Camp, put on by The Lourie Pediatric MS clinic of Stony Brook Hospital. That one is 5-6 days long, held in Rhode Island. Both are free, except for transportation, and sometimes there are stipends to help with that.
I do know the Canadian MS Society sometimes puts on a similar Adventure Camp experience, and sometimes US kids get to go, too.
Other MS groups, including NMSS chapters may have family events for pediatric MS families around the country. There was just one in October in Maryland. Kids get to meet other kids of various ages, do some fun things like high ropes, and there are experts to speak with the adults and older kids.
There are camp experiences for kids with MS. The two I know about are Champ Camp, which takes place in Texas sometime in March, put on by the Pediatric MS Alliance, and in July, Teen Adventure Camp, put on by The Lourie Pediatric MS clinic of Stony Brook Hospital. That one is 5-6 days long, held in Rhode Island. Both are free, except for transportation, and sometimes there are stipends to help with that.
I do know the Canadian MS Society sometimes puts on a similar Adventure Camp experience, and sometimes US kids get to go, too.
Other MS groups, including NMSS chapters may have family events for pediatric MS families around the country. There was just one in October in Maryland. Kids get to meet other kids of various ages, do some fun things like high ropes, and there are experts to speak with the adults and older kids.
Hi.
I'm a mom of a "Pediatric Onset" MS'er. Despite multiple doctors through the years not putting things together, and multiple hospitalizations through the years, she made it to HS graduation this past June.
First, let me say, contrary to what is probably going through your mind, how very fortunate you are to have been diagnosed. Getting kid's doctors to even consider MS is still an uphill battle, but now you know, and can take advantage of the current knowledge about treatments, which has grown much in the last few years.
Please look up these pages about Pediatric MS.
They will give you and your parents much information about education issues, as well as some of the best specialty Pediatric MS centers in the US if you find that you need a second opinion, or if your doctors need to consult with them.
http://www.nationalmssociety.org/Resources-Support/Resources-for-Specific-Populations/Pediatric-MS-Support-Network
On Facebook, there is a dedicated closed group for your parents, made up of parents from around the world who can share their experiences and knowledge. "Pediatric Multiple Sclerosis Alliance" (they also have a web site, www.pediatricms.org) There are also at least two different closed groups for teens with MS on Facebook. Kris Koch from National Multiple Sclerosis Society would be the person to touch base with for an invite to their Teen group.
I'm a mom of a "Pediatric Onset" MS'er. Despite multiple doctors through the years not putting things together, and multiple hospitalizations through the years, she made it to HS graduation this past June.
First, let me say, contrary to what is probably going through your mind, how very fortunate you are to have been diagnosed. Getting kid's doctors to even consider MS is still an uphill battle, but now you know, and can take advantage of the current knowledge about treatments, which has grown much in the last few years.
Please look up these pages about Pediatric MS.
They will give you and your parents much information about education issues, as well as some of the best specialty Pediatric MS centers in the US if you find that you need a second opinion, or if your doctors need to consult with them.
http://www.nationalmssociety.org/Resources-Support/Resources-for-Specific-Populations/Pediatric-MS-Support-Network
On Facebook, there is a dedicated closed group for your parents, made up of parents from around the world who can share their experiences and knowledge. "Pediatric Multiple Sclerosis Alliance" (they also have a web site, www.pediatricms.org) There are also at least two different closed groups for teens with MS on Facebook. Kris Koch from National Multiple Sclerosis Society would be the person to touch base with for an invite to their Teen group.
Hi there & welcome to the MS Community!
I can only imagine how confusing all of this is for you right now but I can only suggest you take your time with making your decisions on what DMD you want or what path you want to take in this direction. It's such a lot to take in & must be quite overwhelming for you being only 16.
I am thinking your first step from here should be to contact your local MS Society/chapter for your area as they can often sit down with you & your family to discuss all your options on DMD & diet etc. I am over in Australia so I don't have that sort of information to give you but I'm sure you are pretty Internet savvy with these things & can get this information off the net.
There are many DMD's available these days but what might be suitable for one person is not for the other. I am a strong believer in being on a DMD as I have had to be on one or another for other autoimmune conditions a lot of my life & I don't think I would be as I am today without them. I also think it's important to excercise & eat well as a DMD is just one part of the equation.
Take Care,
Karry.
I can only imagine how confusing all of this is for you right now but I can only suggest you take your time with making your decisions on what DMD you want or what path you want to take in this direction. It's such a lot to take in & must be quite overwhelming for you being only 16.
I am thinking your first step from here should be to contact your local MS Society/chapter for your area as they can often sit down with you & your family to discuss all your options on DMD & diet etc. I am over in Australia so I don't have that sort of information to give you but I'm sure you are pretty Internet savvy with these things & can get this information off the net.
There are many DMD's available these days but what might be suitable for one person is not for the other. I am a strong believer in being on a DMD as I have had to be on one or another for other autoimmune conditions a lot of my life & I don't think I would be as I am today without them. I also think it's important to excercise & eat well as a DMD is just one part of the equation.
Take Care,
Karry.
You have a long happy life ahead of you. Take is slow and with your parents and doctors you will be great! Sorry you are hear, but you are among helpful friends.
~Linda
~Linda
DMD drugs for MS are kinda like umbrellas or insurance; they can possibly lessen the number of events that cause permanent damage. As young as you are, I would definitely take one of them; which one is up to you, your parents and your neuro.
Hang in there, its a lot to digest…...
Hang in there, its a lot to digest…...
Thank you for the info and the symptoms I have are numbness in my left hand I also lost strengh in my hand too which is keeping me from being able to play guitar :( and loss of balance , I have changed my diet a whole lot , and I actualy have been taking vitiman D3
Hi there!
Welcome to our neck of the Web. I am sorry you have a diagnosis and that is a lot to take in so give yourself a bit of time to adjust.
Choosing whether or not to take a disease modifying drug is a personal choice as others have stated.
All of the injectables have been around for a while now and the drug companies have a lot of information you can browse on their websites.
As for natural treatment, there is not any scientific data at this point that shows they are effective but again that is a personal choice. A lot of us take supplements like vitamins D3 and B12. It is never a bad thing to eat well and take care of yourself
You did not mention if you have a lot of symptoms or if there is anything going on with your MS that is greatly impacting your life but there are also medications that can help with that too.
Best of luck. As long as you make an informed choice that is all that you can ask of yourself.
Corrie
Welcome to our neck of the Web. I am sorry you have a diagnosis and that is a lot to take in so give yourself a bit of time to adjust.
Choosing whether or not to take a disease modifying drug is a personal choice as others have stated.
All of the injectables have been around for a while now and the drug companies have a lot of information you can browse on their websites.
As for natural treatment, there is not any scientific data at this point that shows they are effective but again that is a personal choice. A lot of us take supplements like vitamins D3 and B12. It is never a bad thing to eat well and take care of yourself
You did not mention if you have a lot of symptoms or if there is anything going on with your MS that is greatly impacting your life but there are also medications that can help with that too.
Best of luck. As long as you make an informed choice that is all that you can ask of yourself.
Corrie
Hello and welcome to the club no one wants to join.
Whether or not to go onto the disease modifying drugs is very much an individual decision but the literature does seem to support the efficacy of these drugs.
Within this lovely community there are a number of health pages written by our resident former MD Quix, containing a lots of information on the various things MSers encounter.
Below is a link to one on DMDs that you may find useful, even though it is a little out of date.
http://www.medhelp.org/health_pages/Multiple-Sclerosis/DRAFT---The-Disease-Modifying-Drugs/show/1192?cid=36
This one will take you to the Health Pages Index
http://www.medhelp.org/health_pages/Multiple-Sclerosis/list?cid=36&container_name=Multiple-Sclerosis
Best wishes
Poppy
Whether or not to go onto the disease modifying drugs is very much an individual decision but the literature does seem to support the efficacy of these drugs.
Within this lovely community there are a number of health pages written by our resident former MD Quix, containing a lots of information on the various things MSers encounter.
Below is a link to one on DMDs that you may find useful, even though it is a little out of date.
http://www.medhelp.org/health_pages/Multiple-Sclerosis/DRAFT---The-Disease-Modifying-Drugs/show/1192?cid=36
This one will take you to the Health Pages Index
http://www.medhelp.org/health_pages/Multiple-Sclerosis/list?cid=36&container_name=Multiple-Sclerosis
Best wishes
Poppy
Hi I know it is a shock you can always get a second opinion. I was two when I got MS.The sooner you can get on one of the medications and slow the progression the better. MS progresses with or with out symptoms. They have to list all the side effects but most people do not get them all.
Alex.
Alex.
Hello, I'm sorry I don't have any advice to give you as I'm still in limbo without a diagnosis. Just wanted to send you a note of encouragement as you go forward with your diagnosis...16 and you have your whole life ahead of you! Don't let it deter you from the dreams you have for your future!! Wishing you the best!!
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