I am so sorry you are having to go through all of this. It truly is crazy to be ok and then not and then worse-no real answers. I remember a year ago when I found this site and I was scared out of my mind. I have learned so much from everyone on here. It has been over a year and whatever this is still remains and still very few answers. I have seen some get answers pretty quickly and others like us still in "limboland". Keep us updated. Know you have many thoughts and prayers coming from Kansas! I pray you get answers quickly and medication to help.
I'm with Shell on this one. There is no biospy of a lesion to do. So, find out what the dr is planning on doing next. MRI of the rest of your spine and brain? LP? Any blood work done yet?
L'hermittes and MS type hug sx are indicitive of issues on your spine. MS is a disease of the CN that effects the spine and brain.
Some people have lesions in in their brain, some (a lesser amount) in their spine, some have both.
Doesn't sound like they have definite evidence of MS yet but as we all know here, a dx takes time. IF it turns out to be MS, as Shell said, it's not a death sentence. Most of us asked ourselves why us as well. It's normal.
Follow up with your dr and get a dx so you can start on medication for whatever you might have. Let us know how it all goes.
Julie
Update:
After reading this great forum, I discovered I have L'Hermittes Sign in my lower back after bending my head forward. I assumed it was related to the lesion. This started happening the day after the lesion was found. Not sure if its coincedence or psychological.
I feel for your son and your family and only wish him the best for a solid diagnosis. I know there are less fortunate than my case but this is quite the scare and unexpected.Thank you for your reply and once again wish you and your son the best.
I don't know if it is or isn't. The only thing I can say is keep going to your dr until you get an answer. My son (age 12) has been doing this "thing" for a year now. We had many lesions (a few on brain and many on spine) and still don't have a diagnosis even though symptoms are still there. Never give up. I have asked myself the same question :why? and how could this have happened? I don't know the answer and may never know. Here is what I do know: it is a slow process to rule out other things first (thank god-don't want dr's rushing such a diagnosis), this is a great site with wonderful people (so welcome!) and not knowing what your up against or what to fight is a horrible feeling. I hope this is not what is wrong BUT if it is, atleast there are medications to help. I am a RN and I see so many things that just can't be fixed and there are no options. I try to see the light if it is MS and pray it is not something that has no hope. My heart breaks for my son and all the others in the same or similar boat but many of these people do pretty darn good. I wish you the best and hope you get an answer to whatever this is very soon!
It sure does sound possible, but they can't diagnose it after a single attack (CIS). They will have to rule out everything else first. For your sake, I truly hope your isolated event remains isolated.
Kind Regards,
Tammy
Welcome to the forum. Don't worry - if MS it's not a death sentence.
I'm a little concerned about the biopsy you mention. They do not biopsy demyelinating lesions. Can you add more to what was said by doc in that regard? Also, are you seeing a neurosurgeon?
What else was found in your c-spine? Any herniations?
I have chronic cervical problems from HNPs and only thing that helps is PT, and anti-inflammatories.
The lesion would not be pressing on the nerves, but HNPs could cause this - my pain goes from base of my head, to base of neck top of shoulder and into my arm, then outside forearm. It's horrible - if this is what you are experiencing - I feel for you.
A neurosurgeon would be able to tell you if a herniation was the cause of any damage in your spinal cord.
So sorry for all the questions - but more info will help us, help you.
Thank you for serving our country! I hope we can be a solid source of info and support for you and you can get back to those things in your life you enjoy!
-shell