Multiple Sclerosis (MS) Support Group

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Brain & Nervous System
/ Multiple Sclerosis (MS) Support Group

L'Hermitte's and steroids?

sunshine521
sunshine521
I have had my L'hermitte's kick in off and on since before and in middle of getting my diagnosis. Usually it doesn't stay for too long.

Well it has kicked in about 2 1/2 -3 months ago and has not let up and has just seem to get worse. Of course more I am on my feet the worse it gets. Any slight movement of my neck I am getting shocked to death. My question is has anyone been treated for theirs with a round of steroids?? If so did it help? I wasn't sure if they would even help since I have so much damage there?

I know this may be a stupid question (altho they say no question is a stupid one) I should do a round of roids with everything else I have going on as well but they play such havoc on my body and side effects are awful on me so I told my neuro I would wait and see if it would all pass...well it hasn't! I just was curious I wanted to make sure it was going to be worth it if I did it. I know everyone is different. Just thought I would see if anyone benefited from steroids with this problem before I put a call into my neuro. Thanks for taking the time to read this and or reply! Have a great day!! :)

Michelle
EPagain
EPagain
Have you asked your doc about neurontin?

Best wishes,
EP
sunshine521
sunshine521
Last time I saw him he put me on neurontin...I have worked up to 400mg 3x's a day so far and it has done nothing to help it...barely has helped my feet, legs and hands. Thank you though!
EPagain
EPagain
How about Opana? Have you had your vitamin D3, B PANEL, Omega 3 and 6's looked at. These can all affect your nerves as well as potassium and calcium levels that are required for the nerve impulse and muscle function.

OK stick a fork in me I am done...hope you find something that helps you.

EP
sunshine521
sunshine521
I am getting bloodwork all the time do to all the problems I have been having and all the hospital stays...I am always low on potassium and they have to add it to my IV and send me home with some..yuck! Neuro said something about checking my vitamin D levels when I was there in April and forgot to order them. Who knows maybe I should give them a call, just haven't been happy with him lately. Thanks so much, I appreciate all your help!!!
deleted_user
deleted_user
On the Neurontin...when I first went on it with my gp I was not on a high enough dose. My MS specialist has worked me up to 900mg 4x a day...that seems to be working to reduce the nerve pain wherever it is...legs, feet, butt, etc.

Good Luck!
sunshine521
sunshine521
Thank you!! My neuro put me on it and had me slowly go up and I go see him next month which he may have me up the dosage , I was on it before and couldn't take it due to the side effects and being able to care for my kids but I had help this time until I adjusted with each dose increase. I do have an appointment scheduled with my MS specialist as well so will be interesting and hope I get some relief!!!
deleted_user
deleted_user
Have they had you try Carbitrol (aka Tegretol or Carbamazepine)? I take it through the daytime because Neurontin makes me so sleepy I can't seem to function if I take it during the day. I only take Neurontin at night.

But I have a lot of rib pain (MS hug) and the Carbitrol works great for it. It is still there but not as bad.