I Don't Like Oral Steroids

[KatieAgain]

My MS Specialist moved my appointment up...good for me because I have not been feeling well.

He does not think I am in a true flare, but more of a Pseudo "Type" Flare. The Anemia might be playing a role....who knows. As I said before this is more sensory than anything. He offered me Prednisone or a Medrol Pak to tamper the CNS dizziness until the next TY infusion in a couple weeks.

I took the Medrol Pak...even though its a little stronger than Prednisone. Have taken them before...oral steroids make me sick, but hope there is at least a little benefit in the end.

He went on to explain sometimes our existing symptoms can rear their ugly heads, but in time the will normally settle down once the inflammation resolves. I knew that...did not make me feel better...

He was exceptionally pleased with my MRIs which were done a couple days to me not feeling well. He was happy that there were no more lesions. He told me in all honesty that even with Tysabri he doubted the Cervical Lesions will ever go away. I have 3 distinct cervical lesions, not 5 like the report states. TY might shrink them a bit...but thats about it.

Well...at least I now know. C-Spine lesions are here to stay. I am not in medication failure and old MS Symptoms can rear their ugly heads without warning and it not be a true flare.

Hmmm...I think MS Blows.

[kim-mastro]

Oh,Katie! I'm happy that your Neuro was happy but sad that he thinks your lesion won't go away. Those neuros are so hard to please! Hang on to the fact that he feels that you aren't in a true flare. That's great news! I hope you start feeling better soon and things start to improve for you. I'm sending positive vibes your way!!!

[KatieAgain]

Thanks!

Low dose steroids don't usually do too much...but they might take the edge off. IVSM...already had it once within this past year so that is not an option on the table at this time with my MS Specialist. I don't like it...but he is correct...and I have to trust his judgement.

Looks like I am going to have to ride this out...whatever type of Flare it is. The C-Spine Lesions...yes, that was sad. That is why for me being on a DMD is important. And I think I am agreeing more and more with the new philosophy, treat it fast and hard.

I am actually getting together with friends tonight to try and get my mind off this. I just have to remember not to complain about MS and be chipper. That is going to be my challenge!

[pennstater]

Hi Katie,

Sorry to hear you are not feeling well. Hope your night with friends cheered you.

I am in same boat with lesions C2-C6. I have 8 lesions, and while on Tysabri, have had a little shrinkage of largest at C6.

But I still see it as a win - no new ones in brain, cspine, or tspine. I have to believe Ty is responsible for this.

I think our best hope for old symptoms is myelin repair. Going to keep hoping we see it in our lifetime.

Feel better!

[SNOOPY]

Hi KatieAgain,

He told me in all honesty that even with Tysabri he doubted the Cervical Lesions will ever go away.
Well...at least I now know. C-Spine lesions are here to stay.

Please know it is possible for c-spine lesions to go away. I had numerous (too many to count) c-spine lesions but there are now a countable 3.

Take care

[KatieAgain]

Hi KatieAgain,



Please know it is possible for c-spine lesions to go away. I had numerous (too many to count) c-spine lesions but there are now a countable 3.

Take care

Thanks Snoopy...I do know that. My lesions recently got mapped out back from 99 by my Specialist. Pretty darn good doc.

I have had C-Spine lesions disappear before. In fact correct me if I'm wrong, but C-Spine Lesions are the most likely to heal and resolve.

It was just his opinion that 2 of the 3 current lesions are probably going to be there for good. He said the best hope was for the C6 lesion, because it is newer and not as damaged.

That would be so cool if those lesions would go away. I am glad yours did. I think you and I are the two on this board that have actually had to learn how to rewalk after a nasty flare of spinal lesions. Not fun. But doable...course I was younger.

I am continuing TY...lets hope it at least helps decreases them.

[KatieAgain]

Hi Katie,

Sorry to hear you are not feeling well. Hope your night with friends cheered you.

I am in same boat with lesions C2-C6. I have 8 lesions, and while on Tysabri, have had a little shrinkage of largest at C6.

But I still see it as a win - no new ones in brain, cspine, or tspine. I have to believe Ty is responsible for this.

I think our best hope for old symptoms is myelin repair. Going to keep hoping we see it in our lifetime.

Feel better!

Hi Kathy

My doc sees it as a win too. And yes...my MS was so aggressive 18 months ago...TY was the only available option. Well...except Chemo...and I was too sick.

But when you are not feeling well...you always see the hole and not the donut.

Yep...Myelin Repair would be a very nice thing...but I wont have 10 years. But I think the next generation of MSers will definitely benefit from some kind of Myelin Repair.

I did enjoy time with friends...I really did...we played games. One is taking me to a movie today. Again, I just got to make sure not to complain about MS and suck it up!

[SNOOPY]

I have had C-Spine lesions disappear before. In fact correct me if I'm wrong, but C-Spine Lesions are the most likely to heal and resolve.

I don't know if that is true or not. I do know c-spine lesions are problematic regardless of what the MRI may show (increase/decrease of lesion load).

I am continuing TY...lets hope it at least helps decreases them

I hope TY helps, I really do