Patients Multiple sclerosis
Topic of the discussion
Posted on 10/8/18 6:25 PM
I am not sure if anyone else has had this feeling happen to them or not, but it sent me to the ER yesterday and I am now on a medicine for what they called a bad MS storm or in other words flair up.
Anyone else have burning pain all through their body..tingling burning pain? I did and it was excruciating, even affecting my ability to walk.
Another thing that drives me nuts, is muscle spasms and spasticity, when your leg tightens up and kicks out for no reason..mostly at night. Anyone experience this as well?
I have an appointment on the 24th to discuss trying out Rebif, because I can't be strong anymore on my own like I want to without the pain everyday and the migraines too..I need to get this controlled somehow so am trying to the Rebif injections soon.
Lastly, the Daith piercing I spoke of before. I am getting that this Saturday and will let you all know how it does for migraines. There is proven research that it helps as they are piercing you on a pressure point for pain and it doesn't help everyone, but hopefully it will me.
Beginning of the discussion - 10/10/18Update on current status of MS https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/update-on-current-status-of-ms-511
Posted on 10/10/18 8:51 PM
Well this time it failed, so yay...more IV meds fri, sat and sunday. It never ends lately :( just want to feel normal and without all this pain.
Posted on 10/12/18 6:01 PM
I’m so sorry @Emma2190 that you’re going through this. It must be very hard when you have small children too. I hope your steroids help knock it down.
I want to try a DMD again because things have been worse for me as well. The docs don’t know which disease is causing problems because of the Lupus and Vasculitis too. I have an IgM spike too and finally found a great oncologist who is so smart .. he is the umpteenth dr to call me complicated though ...
Anyway, I meant this to be about you and hopefully give you a boost to let you know I’m rooting for you and tell you I hope the meds work. Please keep us posted.
Posted on 10/13/18 4:46 AM
@Emma2190 So sorry. Are you getting relapses? I hope the anti-inflammatory helps ease some of the pain. The shooting pain is the worse. I tell everyone nothing wors than intense nerve pain! Nothing. People don't understand what we go through.
I hope your appt with the doctor is promising on the 24th! please keep us updated and I would love to be able to encourage you along this journey.
Posted on 10/14/18 1:21 AM
@LynndMS thank you for the well wishes and yes it is very hard to manage these ms relapses or flare ups with my young children but I try my best. I hope things get better for you too with your health and anything else going on.
Posted on 10/14/18 1:30 AM
@msslady I think they are relapses but nothing has been confirmed as of yet by my neuro, though thankfully I got to skip the IVs this time around. For unknown reasons the burning pain has stopped so I was able to cancel yesterday. I would say since now they seem to come and go, that it is most likely a relapse but I wont know anything for sure until the 24th which is actually 3 days after my birthday. I did however get a piercing done finally today that is supposed to help with migraine pain, called a Daith piercing and it has helped others so fingers crossed. Thanks for checking in and I will keep you and everyone updated. The Daith is the middle ear piercing done on a pressure point. @LynndMS because I know you had wanted to see it too.
Posted on 10/15/18 6:47 PM
Thank you @Emma2190
i hope it works!! Please keep us posted and Happy early Birthday ?
Posted on 10/15/18 8:40 PM
@LynndMS it has been so far and thank you :)
Posted on 10/22/18 5:01 AM
@Emma2190 I hope the piercing works! Has it been effective thus far?
Thank you for sharing. That type of treatment is new to my knowledge, so very interested in hearing how it works.
I am also thankful that your burning pain has subsided.
Keep us updated and as @LynndMS said, happy early birthday.
Posted on 10/22/18 6:11 AM
@Lee__R I have had no pain in the left side of my head so yes so far it does, Also to help you in any research you may do on it, look up vagus nerve it tells you all about that and Daith piercing too. If I can find the link again, I will send it. Thanks for the birthday wish too, it was the 21st. As for the burning leg pain, I do not like meds much but this one I was put on is helping with the nerve pain, spasms and spasticity. It's called Neurontin and since being on it, my legs have been better. Lastly, in two to three weeks I will be getting my right ear done too to avoid any further migraine pain on that side.