Steroids (IVSM)

[slightlybroken]

Hello family forum. I hope everyone is doing ok. I'm hanging in there. My body and I are not getting along right now, and we haven't been for awhile. I want to do things but it seems each year that passes it becomes more and more difficult. I shouldn't complain. I'm still mobile, but there was a few days my hubby had to leave me on the couch to sleep because I just couldn't move my legs to walk.

The pulse therapy (IVSM) has seem to lost it's magic. It use to give me a few good weeks. Now, it seems to be causing more problems then anything. I don't feel any different...not something to write home about anyways and my symptoms will still occur even after an IVSM. Is this normal? My last IVSM, within a few days, I had bladder incontinence, with a whole lot of muscle spasticity, etc.. My doctor did say that my DX was PPMS or PRMS.

I'm also having trouble with bruising lately. I got on my hands and knees to look for something. The next day, I was covered in bruises, just from the weight of my own body. It looked like someone had beaten me.

I also noticed another bad side effect of the steroids. I am going through sadness. I'm ok for awhile until something sets me off. Then I just want to cry and I don't even know why. Maybe it's not the steroids and I'm just adjusting to my diagnoses still, or maybe it's because I feel so bad. I just notice that once the steroids start to wear off, I'm crying more. I guess you can say I'm a mess right now...but I'm trying to keep it together.

I think I might take a break from the IVSM for a little while. What do you guys think? My neuros plans for next month is to repeat an MRI and maybe to bring on a DMD. He wants to see what the MRI shows and play things by ear. I think something is going on more in the spine because I've been getting horrible tingling with neck flexing. It happens so much more than it use to. I also just went to the ER not too long ago. I had chest pain that went into my shoulder. I thought something was wrong with my heart. Everything was ok with my heart, but they thought it could be stomach, or muscle spasticity.

Anyways, Thanks for your opinions :)

[slightlybroken]

Guitar_grrrl- My neuro said that too. He believes that DMDs should be tried on the progressive types of MS because there isn't any enough studies done on these groups just because of insurance reasons.. etc.. but he believes everything should be tried to slow the process down.

Tammy -I am on what they call pulse therapy. They give me the IVSM once a month (1 gram). It's a little different compared to when they are trying to calm a flare ( for example for ON). They usually give the IVSM at a higher amount on a 3-5 day course.

When they give it for symptom management it's suppose to calm the immune system and/or hopefully bring you into a remitting stage. IVSM is great for working with white matter inflammation. At least that what my neuro told me.

I never felt back to normal when I was on the IVSM. I don't think nothing will give that back to me, but it did seem to make my meds work a little better and my leg would be able to lift. It was short lived though. The last 4 IVSM dosages I've had seems like there has been no effect, or if there has, it was one day or so the same week of the infusion.

[Guitar_grrrl]

Hey, SB,
I'm sorry you're going through all this.  IVSM can sometimes help, but can sometimes kick your butt, too, with your emotions, stomach, bones, etc.

I'm so glad your neuro is considering a DMD.  I don't think it could hurt to at least try.

Wishing you luck, comfort and relief. (((hugs)))

[maxthecat43]

I'm sorry to hear that your doctor thinks it's PPMS or PRMS.  I'm glad that he's still going to try a dmd though.  
I want to understand the role that steroids play in symptom management.  They completely exhaust me, and I can never feel any improvement, after the first treatment.  To be fair, I did feel better after the very first treatment.  If anyone can enlighten me, I would greatly appreciate it.  

Tammy

[slightlybroken]

Shell- Thank you! My neuro said he was going to see what the MRI looked liked and go from there. So far, I've had 10 dosages of IVSM.. In April it will be 11. It was great at first. No issues...but now, between the bruising, the stomach issues, the blues, and now it really not making a difference, maybe I need a break. I also have been having problems with skin rashes behind my ear. Sorry it took so long to come for help. I'm just so tired.. been so busy with the kids and trying to be normal.

Kelly- Thank you for your answer. I'm going to make my neuro aware of it. I have lesions in my spine and will get electric tingling with the neck flexing and it's been this way for a very long time, but recently it's kicked in to a constant. I'm still doing fun stuff too. I just think I over do things too and make myself feel worse lol. I need to find a happy medium.

Laura-  I was thinking of finding a different specialist since the guy that fixed my bladder wasn't too good with the MS part of it. The surgery did fix the stress incontinence issues, but of course, this issue is neurological from what I was told. I haven't been to the new hospital yet. I did go to MVH South. It was very nice. They believed it was apart of my MS. They thought I was having muscle spasticity in the chest walls. My Mom believed I could be having stomach issues (esophageal spasms) too. All I know is that it hurts. Thank You :) We will have to get together sometime.

[Lulu54]

Darn girl, it took you so long in searching I am not surprised that now it really is kicking your butt.  I am so sorry the IVSM isn't cutting it for you.  I sure hope the doc can come up with a  plan for you to get some relief.  

The bladder problems continuing really troubles me, since I know you have had the services of a urologist over the past couple years and also surgery.  So this problem really stinks.   Can you head to a different specialist and get afresh look at this problem?

I've been in the ER with pains as well that radiated into my shoulder from my chest.  This was acouple months after my heart attack and the doctors could find nothing wrong with me.  Of course at that time they didn't know I also had MS.    Don't ever hesitate to go to the ER to be checked out, ok?  Did you by any chance use the new hospital by the Mall?  We took the open house tour and it sure is a fancy hospital. I don't know anyone who has been there yet as a patient.

Take care of yourself -  I'll keep hoping for a change to the positive for you.
gentle hugs,
L

[anon07072023]

I know that it must be difficult for you right now; I can definitely hear that in your message.  Maybe you really should take a break from IVSM?  I have continuous symptoms and the IVSM does nothing for me (and never has), except make me feel worse.  I'm right there with you and can understand how you feel.  In fact, my neuro won't even let me take it anymore (not that I would even want to anyway).  I have a Dx of RRMS, but I think it's PPMS.

With your numbness with flexing, maybe you have a pinched nerve or the start of a bulging disc?  You may want to mention that to your doctor if you haven't already.  I know I hold a lot of tention in my neck/shoulders/upper back.  And I have to consciously tell myself to let my shoulders down and relax.    

I've been to the ER for what I thought was maybe my heart. They said it was the intercostal muscles spasming between my ribs.  I guess heart symptoms could even be from anxiety from all that's going on.  

I really hope that you can start feeling better soon.  Maybe you need some positive / fun distractions?  Maybe watch one of your favorite movies or find time to do something for yourself.

Hugs,
Kelly        

[sllowe]

Sounds like a relapse to me Slightly-B :(

Wish they would put you on a DMD, though it's written to not be so effective w/PPMS.
I've not read a whole lot of studies with PRMS. But, by chance you could stabilize the relapses regardless of the phase you are in - why not (question for the doc). Press them for it if you have the strength left. I have minimal relapses on rebif for what it's worth.  

Regardless of the source of the sadness, please alert the docs to it - get yourself some help holding all of this together.
Big hugs girl - why did you wait so long to inform us your knee deep in misery? I'm guessing those blues have alot to do with it.
You know we're here for you always!
((((Hugs)))
shell