Newbie :)

[lindsayncadence]

I heard of this forum a while ago from my mom (she has SCA8). I guess I didnt say who I am though... My name is Lindsay I am 22 years old with two Children Cadence who is 5 and Irie who is 6 months and soon to be married one year to my husband Nick. My reason for being on this forum is not my mother though. This past july I started having hand numbness and I sort of brushed it off thinking maybe it was my diet or the way I was sleeping. It happened again in august and september. In september after a long hot day at the fair it had spread to my legs and feet as well. I went to the er and eventually was referred to my DR. He did a vitamin B and folate test as well as an emg told me they were normal and if I had another episode to call and make an appt for more tests. I also had scheduled an appt with my nuerologist and luckily (if you want to call it that) the numbness returned so I could go to that appt while I was numb. He is sending me for a neck and brain MRI friday. He is testing for MS and transverse myelitis. I have suspected MS from the get go and the other does not sound like any of the symptoms I have and I have almost all of them for MS. I am somewhat *hoping* something shows up on my MRI just so I know what is going on. I am tired of being tired all the time, and having all the numbness and others so I am hoping to find out.


WOW long intro sorry about that just thought I would put a background on here just in case I start coming here more often.

[tic chick]

welcome lindsay!*bunch

i'm glad you found us.

yes, it is scary to know something is wrong with you but not know what it is.

i hope you get some answers from your tests.

if you do get a diagnosis of ms, there is a great forum for that here. there are just a lot of great forums here in general :).

whatever path your journey takes, there are people who will care about you. share with them. enjoy the blessings in life, your daughters are 2 of them. we only live one day at a time, so enjoy today!

wishing you the best,
jeannie

[LIZARD]

Hey, Lindsay. :)

I'm sorry you're having to face this. :( Have your MRI combed through very carefully for any degree (even slight) of cerebellar tonsillar ectopia, aka (Arnold)Chiari Malformation. ACM is famous for mimicking MS, but so many doctors blow it as incidental if the herniation is small. The fact is that a small herniation can cause every bit as much trouble (and sometimes more) than a large one for some patients. If you hear either of these terms, RUN--don't walk!--to a Chiari-knowledgeable neurosurgeon. If you find that you need one, I can give you some sites to find one.

*hug and good luck!

LIZARD :)

[lindsayncadence]

I will keep that in mind thanks :) He mentioned if my results are positive doing a spinal tap? I really would live to avoid that at all costs...is it necessary? (I am very wary of anything oging on my back...labor was very hard but I refused an epidural for this reason lol)

Hey, Lindsay. :)

I'm sorry you're having to face this. :( Have your MRI combed through very carefully for any degree (even slight) of cerebellar tonsillar ectopia, aka (Arnold)Chiari Malformation. ACM is famous for mimicking MS, but so many doctors blow it as incidental if the herniation is small. The fact is that a small herniation can cause every bit as much trouble (and sometimes more) than a large one for some patients. If you hear either of these terms, RUN--don't walk!--to a Chiari-knowledgeable neurosurgeon. If you find that you need one, I can give you some sites to find one.

*hug and good luck!

LIZARD :)

[LIZARD]

If you do have Chiari, a spinal tap can make it worse, especially if you end up with a leak. Get your MRI checked carefully for Chiari before you get the tap.


*hug and good luck!

LIZARD :)

[lindsayncadence]

I will be getting a second opinion before I let anyone give me a spinal tap :)

[lindsayncadence]

Just wanted to update...MRI showed nothing. I was kind of hoping SOMETHING would show up just so I knew what was happening to my body. He said it could all have to do with migraines and gave me neurontin to see if it helps. I just still have a gut feeling down the road something will show up...my mom have SCA8 and I hope its not that but something just dont feel right.