Hi Cherie

LOL Lymiegal was referring to me there same name confusion

we know each other, and I am the one who got a message to her via CCO to check here for help re info on MS in brainstem

I've had lyme (1989) and dx'd with MS in 200o. I personally don't think they're related other than the fact that they both cause similar neurological symptoms.

I was an easy dx and was treated within about 3 weeks of the bite. Never had another issue afterwards. Wish I could provide you some assistance.

Is there someway for the docs to know when the lyme has truly been treated and eradicated so that you can tell where the MS starts?

Hi Lymiegal, Welcome to Neurotalk and the MS forum. I second the others about the Lyme issues and getting that under control. I know that the infection from the Lyme can cause MS to be more symptomatic as does any infection so maybe getting the Lyme under control/or eradicated might give you daughter a chance to get a grip on the rest of the her symptoms.

In addition, it might give the docs a chance to treat, or maybe get a better handle on what type of symptoms she's having with her MS.

You might want to check out the National MS Society's website for symptoms and treatment. www.nmss.org They have some good info for the newly diagnoses. There's a sticky at the top of the page that also has some good info that you might want to browse through.

Take it one step at a time and don't overdose on information.

Ask questions, we are here to help you and your daughter. It's a lot to handle all at once!

i can't help you with info but wanted you to know that i read your post and want to welcome you.

i'm sorry you're family is dealing with so much.

best,

I was looking thru the Lesion Locations and Symptoms sticky thread here and noticed this, so hope it can be helpful to you.

http://neurotalk.psychcentral.com/thread3436.html

Praying today has been a restful one for your daughter and family.
Cheri

My 6 yr old daughter had her first attack in Jan 2006 at age 4. She had issues with lesions in the brain stem and other places. At the time she was diagnosed with ADEM or acute disseminating encephalomyelitis. She had another attack in January of this year. We are now waiting on specialized spinal taps to see if it is MS. She has received many doses of IVIG over the past 2 years. Feel free to ask me more specific questions if you would like.

Kaylee has a care page at carepages.com. You can search for her under ms or adem or her name if you would like to read more about her story.

Take care,
Lisa

I wish I had some information to share but I did want to send my best wishes and prayers. I have always felt bad for the "young ones" meaning the kids who were diagnosed in their 20s so I absolutely can not imagine your poor little ones having to deal with these kind of problems.