Frustration!

[QUOTE=dieno]
I will give my last breath doing the things I love rather than give up.
My only advice is do your treatments , push your doctor to make sure that the dx is correct and live today like there is no tomorrow. Keep strong brother.[/QUOTE]

That’s just the advice I was hoping for. I was just about ready to call it quits, or at least take a “leave of absence” from the men’s roller derby team I skate with. Truly, at 48 years old and with my balance damaged by CIDP, the last thing I should be doing is roller skating with other people knocking me down. But I just love the audacity of it, especially because I am the oldest skater and have a disability. Screw it, I’m rolling!

Thanks, Kelly. I have an appointment with my neurologist — Dr. Chin at Weill Cornell in NYC — next week. We’ll explore all the possibilities for changing treatments. IVIg has worked really well for me for 6.5 years. I don’t understand why it would stop now.

It’s great that you are encouraging your daughter that way. Maybe someday, she’ll end up in Roller Derby!

Brian

I’m up to 140g per month. I think, when I first started, I was as high as 80g per week for two weeks. Anyway, I will discuss upping the dosage even more.

Yeah, I am not above falling on my ass and letting other people help me up if I need to!

Thank you all for the support and encouragement. I did skate last night. I couldn’t do some of the things that I normally can, but just to be out there was such a feeling of empowerment. I have CIDP; CIDP doesn’t have me! Thanks for those powerful words!

Thankfully, the foot drop was only during the time between the symptoms starting and me getting diagnosed. Now, I can walk and run pretty much as normal, but I have tired muscles that twitch. I also have a lot of sensory deficits, especially in my feet and hands. Sometimes putting the skates on and tieing them is a major challenge because I have a lot of weakness in my hands and forearms.

[url]www.burlingtonbombers.com[/url] is our team’s site. The Burlington Bombers are also on Facebook.

It’s so hard to explain my illness to my teammates. They are very supportive and want to be helpful, but, unless they know someone with MS, it is very difficult for them to understand.

I saw Dr. Chin on the day before Thanksgiving. He believes, based on 6+ years of treating me, that I can get back to the level of function I had before the current flare up. However, because I am taking the maximum dose of IVIg (140g/mo.), the recovery has to be jump started through other means — i.e., steroids.

During the first year or so of IVIg, I would get a small dose of steroids as a prophylaxis against an adverse reaction (along with Benadryl). Even that small dose made me hyper sensitive to noise, irritable and moody. It interfered with my sleep, too.

This week, I will be getting 3 infusions of Solucortef (steroid), followed by a 5-day tapered dose of oral Prednisone.

Does anyone have any advice about how to deal with the expected side effects?

Thanks.

Thank you, Dick, for the very good advice. The mood swings are what worry me the most. Hell, I have a temper even without the ‘roids.

I’m getting 3 infusions of Solucortef this week. Same dose each time. From there, I start on 5 days of Prednisone, tapering down each day. I am hoping that the relatively short duration of this will make it easier for my family, co-workers and friends. However, I still remember during one of my first IVIg treatments when I had a tiny bit of Solucortef and wound up ripping some guy a new one for no good reason.

Knock on wood or any other hard surface, but the steroid treatment is reducing the symptoms of this extended flare up. Sensation is returning to my fingers and feet, and grip strength has improved. My balance still isn’t what I would like it to be, but is improving slowly.

I hope this is the jump start that I needed and that the improvement will continue after the ‘roids stop on Saturday.

Thank you all for your support!

This is a much better emotion than frustration. I am extremely grateful that a week after ending a two week course of steroids, I feel 90% back to where I was before the flare up.

I am grateful to all of you that provided support.

Brian Sullivan

The side effects weren’t as bad as I expected…but I expected them to be pretty bad. I was edgy a lot of the time. If I did anything at night that increased my heart rate, getting to sleep was a real challenge. I was sensitive to noise and found it very hard to attend an office party where there were numerous conversations going on at the same time. I got heartburn a lot.

All in all, it was a small price to pay for the benefits of ending the flare up.

It’s a shame that cost has to decide the treatment method.

I forgot to add that, if he is getting the steroids through an infusion, he will probably develop a metallic taste in his mouth during the drip. Lemon drops help.