This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi. I am new to this message board. Wonderful informative site, by the way...I have a 16 year old son who was diagnosed with MS 3 years ago, and I have been unable to find anyone anywhere near his age with this diagnosis. Do any of you know of anyone in their teens with MS? He was initially diagnosed with encephalitis, but after it reoccured, they switched his diagnosis to MS. He is currently on Rebif, but as soon as he finished this supply, we are switching him to LDN. We've been to countless neuros in an effort to make sure he is diagnosed properly, and were ultimately told that even if it isn't MS, it could be something equally rare and difficult to diagnose, and that we need to treat the symptoms. He has no symptoms other than heat intolerance at this time, and that is not constant. I would appreciate any input you might have on this. Thanks in advance!

_________________
Kim R.

Hi There!

Welcome to our site... I'm glad you've found it useful. I'm very sorry to hear of the young age at which your son was diagnosed as possible MS, but of course the future is bright, and that's what we aim to show here.

I'm not aware of any of our members who are in their teens, but I could very well be wrong. What I *will* do is set up a special "Teens with MS" forum on here so we can have a dedicated place to discuss these issues (and it will catch the eye of our younger community members).

welcome again, let us know if we can do anything to help.

-a

Thanks, Aaron, but don't go to the trouble of setting up a special forum for teens on my account. I've been trying to find someone as young as my son with MS for 3 years now, and there is no sense in having a forum that I am the only one who posts in... I talk to myself alot, but that would be more than even I could handle! I'll just hang in here with the big dogs!

Kim

_________________
Kim R.

Kim, here's a brand new study that is focused on kids with MS. Maybe you could follow up with the contacts listed in there?



Curr Neurol Neurosci Rep. 2004 May;4(3):245-52.


Pediatric multiple sclerosis.

Banwell BL.

Department of Pediatrics (Neurology), The Hospital for Sick Children, 555 University Avenue, Toronto, ON M5G 1X8, Canada. brenda.banwell@sickkids.ca

The onset of multiple sclerosis (MS) in childhood is being increasingly recognized. Despite this, there currently exist several barriers to the prompt diagnosis of MS in children. Many clinicians view MS as an exclusively adult-onset disease, and thus they may not entertain the diagnosis in a child. Also, the clinical and radiographic criteria for the diagnosis of MS have not been validated in a pediatric MS population. The available literature, as well as experience gained in a dedicated pediatric MS clinic, is used here to describe features of pediatric MS and contrast these with adult MS. The rationale and importance of future studies in pediatric MS is highlighted.

PMID: 15102351 [PubMed - in process]

Thank you, Aaron. That link was sent to me yesterday, and I found it very interesting. Are you also aware that there is a pediatric MS center in Rockport, New York called Stoney Brook? If anyone is interested in checking it out, you can find it at the following link.

www.pediatricmscenter.org/

Thanks again! Have a good day!

Kim

_________________
Kim R.

Hi Kim,
I can completely understand your frustration! My son was just dx in Feb 2004. He is 19 y/o and has probably had it for a couple of years. He presented very severely and his MRI was positive for many many lesions. The radiologist stated in his report that my son was most likely dealing with Marburgs Type which is the rarest and most fatal type of MS. It has been over three months since his initial diagnosis and although he had a small flare up recently, he is now doing great! We found a terrific neuro and he is now using Rebif and we believe he is heading into remission. Of course the radiologist was wrong and we now have alot of hope. There are other young people out there. A great place to try is www.msactivesource.com We could exchange e-mail addresses, I'm sure my son would love to talk to yours. Good-Luck to your child and family.
Elaine

Hi, Elaine. I would certainly like to hear more of your son's story. You may email me at petessweetheart AT yahoo DOT com [edited by Arron to prevent your e-mail from getting spammed]. I look forward to hearing from you! Your son is the closest I have found to my son's age. Colby had 20-30 lesions at the onset. I know exactly what you are going through. Take care!

Kim

One of the Boston Cure Project's directors, George Peabody, has a daughter who was diagnosed at 15 and had a similar problem tracking down folks to compare notes with. He started http://www.familieswithms.org to try and bring people together. You might want to drop him a line - he's a great guy. He can be reached at gpeabody -at- bostoncure.org (obviously you'll need to changed the " -at- " to "@", but I'm trying avoid having him get tons of new spam from spambots).

Kim, you need to know that LDN has no research behind it as a treatment for multiple sclerosis, as opposed to Rebif being shown in multiple studies to be effective in slowing the progression of MS. While these studies only show aggregate efficacy and therefore cannot reliably predict what will happen in any individual, they nevertheless offer your son a chance that's been well-documented.

To take him off of a proven drug and put him on an untested alternative is, in my opinion, highly irresponsible of you. I have a cousin in Wisconsin who, for different reasons, failed to comply with his Betaseron regimen. It's impossible to say whether this is responsible for his condition today, which is that he's numb below the waist and suffers from frequent bowel incontinence among other things, but he certainly didn't improve his odds by failing to take his medication.

How will you feel if your son's case progresses after he goes off of Rebif? Will you be able to live with yourself? If it were my kid, I wouldn't sleep very soundly.

If Rebif's side effects are too burdensome for your son, he could use Avonex, Betaseron or Copaxone, all of which have generally less severe side effects while showing similar efficacy. I use Avonex, and find that I can handle the side effects without a lot of problems. There is nothing preventing him from using LDN alongside these drugs. Please think it over before climbing aboard a quackery bandwagon.

I have to support Willy totally on this.

Even as much as I am advocating desipramine and am convinced of its efficacy, I sincerely do NOT advocate anyone currently on existing injectable treatments for MS to ever go off of them in favor of trying desipramine or any other unproven medication. No way!

Also, this might not be the best thing to do (Arron, please excuse me, because I'm truly not trying to send ANYONE away from this website), but www.msworld.org (an NMSS associated support group board) has a very active teens with MS forum that I think you may find very helpful. Arron, if I shouldn't mention this, please feel free to admonish me or delete my suggestion. I only recommend this because their teen board is already established and has been for some time.

The folks on that board are extremely compassionate and supportive, and I think you may find (as Willy might refer to it) wonderful "warm fuzzies" and extreme compassion and sharing of experiences and difficulties. Plus, your son, I'm certain would probably come into contact with someone else of his age and similar situation to make friends with.

All the best to you!

EDIT: Oh, and I totally agree with Art, too.

Well, shoot, here's EDIT NUMBER TWO: I just bounced over to MSWorld, and lo and behold after a quick peek, there are three new kids over there. Two are 16 year olds with MS, and one is 15, and they are tickled over locating each other. Give it a shot!

Deb

Actually, LDN is contraindicated when using Interferons. Here's one reference (search for side-effects):
http://www.msrc.co.uk/index.cfm?fuseact ... pageid=625

Be careful of getting your medical advice from posts on a web site (including this one) without checking it out with a few reputable doctors. Also, remember that lack of evidence is not evidence of lack (or existence).

Kim,

Sorry to hear of your son's possible MS diagnosis.

I personally don't know of any teenagers with MS but perhaps you may be able to obtain some helpful information from The Hospital for Sick Children, in Toronto Canada. I also noticed that Arron also recommended this facility. They established a MS Clinic there a couple of years ago when they started to discover so many young children who were diagnosed with MS. I'm sure they can assist you in some way or provide you with literature. They are world renowned and an excellent health care facility for children. I don't have the phone number but I don't think it would be very difficult to obtain.

Good luck.

Harry

Hi people,

First of all, there is never any advocacy on this site to drop proven treatments in favor of experimental ones without consulting your doctor who knows YOU best. I know you all know that already, but it's worth mentioning as that is a VERY serious issue to us.

Feel free to post links to other web sites. We are not in this for the glory; we are in it to improve the condition of MS. As we've said before, when MS is no longer viewed as a serious disease, we will be the happiest people on earth to pull our own plug.

I will say that the MSworld bulletin board is sponsored by Betaseron, and that makes all of us very uncomfortable that you will truly get unfiltered advice. That's not to indite their board or the NMSS, but common sense says that when your board is funded by Betaseron, you will probably not let people gather and discuss the negatives of that particular treatment too loudly. That is conjecture, but common sense. Willy, be forewarned I don't want a 3 page response to this paragraph . I think everyone understands the pros and cons of sponsorship, and that the above is the opinion of our site only-- people can make up their own minds.

Let's say it again: Just as with all web sites (including our beloved This is MS), all the information you gather needs to be discussed with your doctor before changes to your treatment plan are indicated.

The only people I know of who "contraindicate" LDN with interferon are two quacks. One of them, "Dr. Bob" Lawrence, is the one you've cited. The other is a "Dr. Bihari," who has made a series of outlandish claims for LDN. Both of these people are advising MSers to drop their interferon therapy and use LDN instead. No reputable physician would ever do something like that.


I am one who thinks LDN should have a drug trial. There are enough anecdotes to justify it, in my opinion. But until a trial happens there is no proof of anything. Therefore, it is irresponsible to drop an approved treatment for a speculative alternative.

Arron, I agree with you about Betaseron's sponsorship influencing the tenor of a board. I would highly recommend the Massachusetts General Hospital BrainTalk forums as a place where approved therapies and alternatives are discussed and sometimes hotly debated without the influence of drug company sponsorship of any kind. "Dr. Bob" and "Dr. Bihari" have been debunked there, too.

p.s. Arron: See? I only needed one paragraph.

Willy,



Don't you think calling a mother with a newly MS diagnosed son, "highly irresponsible" is kind of crossing the line a bit? You can give any kind of medication information you want and relate the pros and cons about them but for once in your life can't you at least be a bit sensitive in replying to this new forum member?

And referring to people who are using and finding benefit from LDN as part of the "quackery bandwagon".....I would imagine that several readers find that comment rather insulting...that is, unless they consider the source!

Harry