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Newly Diagnosed

Posted: Mon Dec 17, 2012 9:36 pm
by AtlantaJacket
Hi, all. I was diagnosed today with MS. My journey began three years ago when I started suffering from frequent severe headaches and was diagnosed with a Chiari Malformation Type I. This year, I started experiencing some new "glitches" - predominantly, Lhermitte's Sign. After a new batch of MRIs revealed a Transverse Myelitis, my neuro ordered a bunch of blood work and a new brain scan. Today, I saw six new little white dots on my brain. I have a stack of reading to do about treatment options, none of which sound very awesome (Betaseron, Rebif, Copaxone, and Avonex), and a lot of questions.

I'm 35, an assistant professor of English at a community college in Atlanta. I'm divorced and the father to a very amazing four-soon-to-be-five year old. I look forward to getting to know folks here.

Re: Newly Diagnosed

Posted: Tue Dec 18, 2012 3:03 am
by NHE
Welcome to ThisIsMS. The decision about which treatment to go on is a confusing one. I recommend posting your questions in the various treatment forums. Here's my experience in choosing a medication.
http://www.thisisms.com/forum/avonex-f5 ... ml#p163704

NHE

Re: Newly Diagnosed

Posted: Wed Dec 19, 2012 6:11 pm
by want2bike
Some people treat disease with diet and do not use the drugs. Get the information and make it your choice. Here is a link as to how Dr. Bergman treats autoimmune disease. He claims to cure them without using drugs.


Re: Newly Diagnosed

Posted: Thu Dec 20, 2012 1:11 pm
by jimmylegs
welcome to TiMS, aj.

interesting, i didn't know anything about chiari malformations. what i learned so far: there are several types. yours, type i/'secondary' CM, is the only one that can be acquired after birth (vs primary/congenital CM which can be caused by genetic/nutritional issues during fetal development).

CM has several different causes. It can be caused by structural defects in the brain and spinal cord that occur during fetal development, whether caused by genetic mutations or lack of proper vitamins or nutrients in the maternal diet. This is called primary or congenital CM. It can also be caused later in life if spinal fluid is drained excessively from the lumbar or thoracic areas of the spine either due to injury, exposure to harmful substances, or infection. This is called acquired or secondary CM. Primary CM is much more common than secondary CM.

so. injury, exposure to harmful substances, infection. do these appear in your medical history to such an extent that the docs feel confident they're the source of your issues? also, do they know for sure that it developed later in life? is it possible a slowly developing issue has begun to manifest itself, but it was always there? based on this blurb about it, it seems like type I is actually primary, but it just doesn't get noticed as early as more severe primary cases...
"Type I involves the extension of the cerebellar tonsils (the lower part of the cerebellum) into the foramen magnum, without involving the brain stem. Normally, only the spinal cord passes through this opening. Type I — which may not cause symptoms — is the most common form of CM and is usually first noticed in adolescence or adulthood, often by accident during an examination for another condition. Type I is the only type of CM that can be acquired."

i will have a read, to try and find out how researchers think this problem is acquired when it manifests later in life.

Re: Newly Diagnosed

Posted: Thu Dec 20, 2012 5:56 pm
by AtlantaJacket
Hey, jimmy

All good questions. Unfortunately, I don't have a lot of answers. I did play football in HS, sustaining two concussions, and soccer in HS and college, also resulting in some pretty nasty knocks to the noggin. From what my neurologist tells me, my Type I is congenital, just doesn't rear it's ugly head until later - that's what happened with me. Though, as it may be with all of us, we don't always "listen" to our bodies. After my initial diagnosis, I realized I had been experiencing Chiari headaches as early as 25, but just thought they were killer headaches. It wasn't until I started experiencing them after sex that I decided something wasn't right.

It's been an interesting three years to say the least - between the Chirari diagnosis and my diagnosis on Monday.

Re: Newly Diagnosed

Posted: Thu Dec 20, 2012 6:01 pm
by AtlantaJacket
want2bike wrote:Some people treat disease with diet and do not use the drugs. Get the information and make it your choice. Here is a link as to how Dr. Bergman treats autoimmune disease. He claims to cure them without using drugs.



Thank you! I am certainly interested to learn more! I'm meeting with my parents' OP in a few weeks to hear her perspective.

Re: Newly Diagnosed

Posted: Thu Dec 20, 2012 6:51 pm
by jimmylegs
ok interesting.

anyway if you are interested in working with your docs to check your individual nutritional situation against typical ms patients and typical healthy controls, my regimen link below contains lots of info.