Second guessing

Posted , 4 users are following.

Hi there my neuro wants to put me on Tecfidara but I refuse to after reading the risk of the PML infection. I feel like she's setting me up for failure. Are there any other helpful good medications that you will recommend?

0 likes, 12 replies

12 Replies

  • Posted

    I don't know why because I looked up this particular medication (Gabapentin)...but my sister has MS and was prescribed this medication.

    I was prescribed this medication for pain.

    BUT...when you look it up...it says it is for "epilepsy"...Hmmmm.

    But the Dr. that prescribed it to my sister IS the best Specialist in our area....However, t his medication makes my sister TOO groggy and it doesn't really do much to me...at all.

    • Posted

      Yes gabapentin is for epilepsy but it also treats nerve pain witch you get with ms numbness and tingling are closed as nerve pain you need to find the dose that suits
    • Posted

      I don't think I have MS marie....but I have many "white" spots on MRI...just not in the exact places they look to diagnose MS....but they are sending me for a Lumbar Puncture to complete diagnosis.

      I do take Gabapentin for nerve pain thou.

      And it does help with my anxiety.

    • Posted

      Hi Missy,

      I was found to have quite a few white spots myself.  They are mostly subcoritical.  I'm told they are not consistent with MS, but I also have strange nerve pain in my legs, mostly lower, but widespread in my legs.  This is very true after I have been on my legs for some time or try to workout.  This pain is the oddest sensation, somewhat itchy and stingy.  It's hard to describe.

      I also take Gabapentin.

      I'm curious what your nerve pain is like?

      I have also had MRI's of my cervical and thoracic spine, both of which are negative.

    • Posted

      Hi Missy,

      I was found to have quite a few white spots myself.  They are mostly subcoritical.  I'm told they are not consistent with MS, but I also have strange nerve pain in my legs, mostly lower, but widespread in my legs.  This is very true after I have been on my legs for some time or try to workout.  This pain is the oddest sensation, somewhat itchy and stingy.  It's hard to describe.

      I also take Gabapentin.

      I'm curious what your nerve pain is like?

      I have also had MRI's of my cervical and thoracic spine, both of which are negative.

    • Posted

      yea, I had the MRIs on spine too.

      The pain I have is achy...and then I start limping....my bones hurt in my hips, ankles and legs...

      I really don't know if it is nerve pain cause I was diagnosed with Fibro as well...

       

    • Posted

      Mine is just really strange biting pain.  Thank you for responding.
    • Posted

      Its really HARD to describe the pain.....honestly..its majorily annoying...

      I kept asking them..are you sure I don't have bone cancer!?

      LOL...thank God I don't think I do...but they did ask me to go to an Oncologist for my wacky blood work.

      But, I truly believe my blood work is wacky because I struggle with an alcohol problems.

    • Posted

      I have had the same thing.  Weird occasional deep bone pain.  Almost like the growing pains I experienced when I was growing up.  I have thought about seeing an Oncologist as well, but now it seems to have morphed mostly into this biting nerve pain in my calves and shins. 

      I only have brain lesions, so this might be something else causing this.  Like an infectious process.

    • Posted

      So all your auto immune tests came out ok?

      Mine did not...the inflammation markers stay high and they can't pinpoint why.

      I have to say I am glad the inflammation markers show high because otherwise..I look normal and sometimes I feel like people think I may just be complaining for sympathy or attention.

      I'm not however excited about exploring the oncologist even thou I know rationally if they find cancer early it is better...but bone cancer is basically a death sentence and I'm scared to hear it.

       

    • Posted

      I have had a ton of blood test over the past year and everything is pretty much normal.

      I too look normal, so everyone thinks I am faking. It's not a good position to be in as you can relate.

      I'm not very familiar with bone cancer, but you would think you would have.other symptoms like fevers and swollen lymph nodes if you had it?

      All I can say is that the big man upstairs has chosen us to walk this path for a reason. It may take is a while to figure out what that reason is.

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