Important news for MS patients under the age of 30!

DrDiana · Post by **DrDiana** » Wed Jun 29, 2011 9:32 am

Hi,

I am learning something fascinating about those of us with connective tissue disease and M.S., and am working on a retrospective analysis (looking back in time) at the head circumference growth (and lengths and weights) of babies from approximately birth to approximately 15 months.

Doctors haven't always collected head circumferences of patients (except in Sweden!), but have done so more religiously in the last couple of decades. So patients can usually get these numbers from their baby books, or from their (old) pediatricians.

Although retrospective studies do not need to go through the official clinicaltrials.gov site, nor do they require an IRB ("ethics committee"), I am doing both, just to stay on the ethical side of everything (identities will be protected, etc.).

Please let me know if you can help me by finding these numbers. My study is on my website (2nd one down) here:
http://prettyill.com/resources/studies

Thank you so much!

emaugust · Post by **emaugust** » Sat Jul 02, 2011 10:58 pm

Maybe I am a bad reader, but what does this have to do with those of us under 30 with MS?

DrDiana · Post by **DrDiana** » Sun Jul 03, 2011 11:08 am

Hi Emaugust,

I didn't do a very good job explaining that, did I?

What I'm studying is whether M.S. patients have rapid increased head circumferences in the first 15 months or so of life (patients with Ehlers-Danlos do). This indicates a low-level of high pressure (if you can follow that one) on the brain.

The reason I'm reaching out to M.S. patients under the age of 30 is purely because doctors didn't always take those measurements until a couple of decades ago. So people over 30 likely don't have these measurements. But people in their teens and 20's can usually get these numbers from their baby books, or from their previous pediatricians.

I'm eager to see if this plays a role in our predisposition for developing M.S. and/or other neurological disorders.

Does that make more sense?

Thank you for asking me to clarify that! I must have been in a brain fog when I wrote it. (BFIR - "Brain Fog is Real").

scorpion · Post by **scorpion** » Sun Jul 03, 2011 1:42 pm

Hey ever since I was little I could not get a baseball cap to fit on my head and I just chalked it up to dumb luck!! On top of that I have always been referred to as an airhead so maybe I should have taken people literally? Bigger heads. Sure Diana. Or Diana Sure(for those young enough to remember!)?

DrDiana · Post by **DrDiana** » Sun Jul 03, 2011 2:18 pm

Hi Scorpion,

I can just picture that baseball cap sitting on top of your head.

Is there any chance you could obtain your head circumferences (and lengths and weights) between approximately birth to approximately 15 months?

Or do you know of anyone with M.S. who may be able to do that?

I'd be so grateful. The trial is listed at clinicaltrials.gov, NCT01377805
Or, here is the direct link for trial information: http://1.usa.gov/k7wBFm

"Sure, Diana" would be a great response.