Since I work in the high tech field, it’s pretty normal for me to seek resources online. That is the first thing I did when I found out I had MS. My doctor had said to call the National MS Society and get some information but I wasn’t ready to talk to a live person on the other end of the phone. I looked around online and that made the whole thing so much scarier.
I think there are two types (Ok, there are more than two but these were the scariest types to me) of people on Multiple Sclerosis message boards. The first type is the person that does not have Relapsing/Remitting Multiple Sclerosis but instead the more progressive/advance types of Multiple Sclerosis. I remember being completely freaked out that I would have pee/poop problems. Yes, it’s reality and very possible that I might be there some day but it’s not a good reference point for a newly diagnosed person with RRMS.
The second type is the I hope it’s Multiple Sclerosis crowd. There are a few sub-sections to this group. There are the folks that can’t find a decent doctor to actually diagnose them correctly (no problem with this group). There is the one that has just had one incident and their doctor isn’t willing to diagnose until they have another relapse (clearly no problem with this group either). And finally there is this group that really wants multiple sclerosis to be their disease. They have general problems however they seem to be very extreme. They aren’t able to walk, they are on disability, they have pee/poop problems and a lot of advance MS type problems. They have seen doctors but the doctors always tell them it’s in their head. They ask everyday if their symptom of the day is due to MS. Their symptoms are not under control. They using the ER as their primary care. They cycle through neurologists because they aren’t giving them the tests/diagnosis they want. This is again a bad reference point for a newly diagnosed person.
So where should you go? Well, I would stick with reviewing the National MS Society website for a little while. After you are bored of that, google different MS related questions which will allow you to read the research out their on the latest treatments. Once you feel comfortable with the MS vocabulary, then I would suggest reaching out to a MS related message board. My favoriate is Patients Like Me which allows you to look at peoples profiles so you can see what problems they have, how long they have had MS and the medication they are on. It is a great resource as long as you can separate those in the two categorizes I mentioned above.
In other news, I did an injection in my arm for the first time and I was dying in pain all night long. I thought that this was the last time I was doing my arms but then I figured out it was the muscles that were sore from playing Wii Boxing. 
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8 responses so far ↓
1 squiffy // Jun 25, 2008 at 1:43 am
Hi, I read your post with interest, and would liek to suggest, if you would like to review a very comprehensive MS website, please have a look at the Multiple Sclerosis Resource Centre site, here in the Uk – http://www.msrc.co.uk
Also we run a very inclusive set of MS Message boards, open to all MSers, whatever their diagnosis at http://msrcsharing.yuku.com/directory
The MSRC also recently launched a new totally inclusive MS community on the Net in collaboration with cre8Buzz, this can be found at http://www.cre8buzz.com/multiple_sclerosis
This new community provides not only up to date MS News and Stories, but a place where those affected by Multiple Sclerosis can communicate with others affected by the disease, and the wider public, by means of Online Blogs, Discussion Forums and Net-based social interaction.
kind regards
squiffy
MSRC Webmaster
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ninareply on June 25th, 2008 6:37 pm
Hey Squiffy,
Thanks for the reply. I will spend some time looking over those!
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2 Nadja Tizer // Jun 25, 2008 at 7:59 am
Hey lady. I love your blog but I think you might be wrong abot who is online. I certainly have found other types. I have not been diagnosed the same as you but I do have MS and I am not on meds, not worried and enjoying my life. Most of the blogs I read are very positive. If your not sure where to look, email me.
[Reply]
ninareply on June 25th, 2008 8:07 am
There are a lot of good blogs and I haven’t seen a single blog that wouldn’t be good for a new person.
I was more talking about forums and online message boards like MSWorld, WebMD, Patients Like Me and a few others.
I spoke to my Neurologist about this and he also agrees that it’s not a good place for a newly diagnosed person. I do think Patients Like Me is ok because it gives a good look into someones health history and you can match your problems with others.
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3 Terri Pollock // Jun 25, 2008 at 8:41 am
One of the things I know about injections is if you don’t use the muscle you are more likely to have an injection site pain. My friend says the military required x number of push up after shots. Don’t know if you need to go that far. Also, don’t know if your meds fall in this general rule.
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ninareply on June 25th, 2008 6:38 pm
These injections are suppose to go into the fat which is good because I have a little extra of that.
They are little tiny needles like diabetics have.
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4 Lisa Emrich // Jun 25, 2008 at 12:00 pm
Nina, Nina,
I know you haven’t been at this very long, but there’s so much more to the online communities than you are giving credit. Certainly no matter where you go as a newly-diagnosed person, the information can be overwhelming. It takes a while to digest.
Granted there are folks online who emphasize their worse symptoms and disabilities and there are those who seem to be cheerleading a “I can do it ALL” attitude. It’s finding people and sources of information which can be trusted that is difficult. Even on ‘Patients Like Me’, there is a lot of stealth marketing going on. As companies move more into using social media, it will become even more difficult to find objective messages which serve the needs of MSers of all stages.
An example might be your blog. When you submitted a post to the Carnival, I gave you the benefit of the doubt that you are indeed who you say you are (especially since you had not been in contact on my blog at any time before or since). As a newly-diagnosed person yourself, you have managed to discover a wide variety of online communities (including LiveJournal) and have created an outlet to share your discoveries. Keep looking, there’s more good out there than not.
P.S. Could you be so kind as to add Brass and Ivory to your blogroll? We need to support each other in the blogosphere. BTW I saw where you submitted msgirl.org to the Healthcare100, as did 6 other MS bloggers in the past month.
And sometimes using a jumping off point like msresourcelinks.blogspot.com is helpful.
[Reply]
ninareply on June 25th, 2008 6:43 pm
Darn, I had added your blog but I got the Carnival link and yours messed up. I fixed it and both are on there. Sorry about that.
I have been trying to figure out how patients like me is going to market itself. It doesn’t appear to making money for the MS boards but maybe for the ALS side. I imagine they are selling our information within the profiles to drug companies or other but not sure.
I hope that I am able to find good reliable unbiased information via other means but I do like the personal touch to questions. The boards are a great resource, I just found them very scary in the first couple weeks.
I don’t think I have seen msresourcelinks yet. I am going to take a look at them.
Thanks!
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