Possible Relapse or Increase in Symptoms???

[anon07072023]

Hi All, You know me - since my symptoms started about 3 yrs ago, they're just slowly gradually getting worse. Yesterday, I went in for a follow-up with my neuro. When I was there, I told her how I keep getting tight banding around both sides of my ribs and sudden tight spasms in my left hamstring - but these feel different then the usual symptoms that I have.

Now, today, I have tightness in my pelvic floor (which has ALWAYS been on my right side) all the way across the center, to the left, across my butt, down the inside of my left leg. And tightness/spasticity on my left hamstring.  I am gettng numb/tingling across my pelvic bone, groin, private area and it feels like I'm going to go to the bathroom on myself. There are pinpricks across my left calf and my left foot is numb/tingling with my toes feeling stiff.

Oh, the nurse just called me back right now from my neuros office. She wants me to try a medrol dose pack and increase my Baclofen back up to 80mg (from 60mg). And to take 4 times my usual dose of Clonopin.  Kind of scary since I told her when I was taking a full dose of Clonopin I felt like I couldn't breathe that well with all the Baclofen.  Then she had previously told me to only take half a dose, instead, for that reason.  

Anyone ever try a medrol dose pack instead of the IVSM?  I know I've been banned from the IVSM because of my terrible side effects and hypersensitivity.

Thanks everyone,
Kelly

    

[anon07072023]

When I get it via IV, the treatment seems worse than the symptoms. Then I was banned from taking that because of my reaction to it. Next time she was going to have me take ACTH injections inside of my muscle - I'm glad she didn't remember about doing that this time around. Now, that would be awful.

They must have maybe forgotten about not having me do the IVSM because she said she would start them, but they'll be out of the office until next Tues. I'm not exactly sure.  I just hope this doesn't make me lose more weight.  Last time I was on IVSM I think I remember losing about 5 lbs in about 4 days from taking it.  That would bring me down to close to 90lbs.  

[rendean]

Kelly,
A Medrol dose pack will not have the same efect as the IVSM but the IV steroids come with their own set of issues as well.  When my neuro was out of the office, the cheif of neurology called me in a Medrol dose pack to get me through the weekend with occipial neuralgia. It worked,at least enough so I wasn't miserable.

Klonopin has a long half life and it is what I take for muscle spasms since Baclofen did nothing for me.  Was the nurse sure about the 4x the amount? or was it a one time dose?

It sounds like you are absolutely miserable. I'm sorry.  You've been through a lot lately too.

I hope you feel better soon. Let us know how the drugs prescribed worked for you.

Sending ripples of good thoughts,
Ren

[HVAC]

Sounds misearble. I would rather have IV since the orals are harder on me.

Alex

[anon07072023]

Thanks. I just went to pick it up. Each pill is only 4 mg. I have to take all 6 today for my first day.  That's only 24mg - a far cry from 1000mg. Hmmm...doesn't sound too promising....

[torikat32]

hey kelly sorry your not feeling well I hope the medrol dose pack helps its usually 4mgs in divided doses that decrease every day for 6 days so on day one you take 6 tabs then decrease down to one tab much lower dose than the IVSM so I hope you will be able to tolerate it better . I would try to hold off on he increase in klonopin since ou have had that reaction before and hopefuly the low dose steroids and the increase in baclofen would help you. I think ivsm is 1g dosing

[anon07072023]

Anyone know how much mg you would get in an IVSM? I was thinking it's 1000mg or is it just 100mg?