Yep, you are probably close to 1/2 way through the WORST of this. The hardest time is the first 4 - 6 weeks (you are over two weeks into it now), and although recovery is not immediate, things should slowly start to improve from that point.

Cherie

BTW, recent trial results:

Neurology. 2008 Jul 22;71(4):265-71

Intravenous immunoglobulin in relapsing-remitting multiple sclerosis: a dose-finding trial

Fazekas F, Lublin FD, Li D, Freedman MS, Hartung HP, Rieckmann P, Sřrensen PS, Maas-Enriquez M, Sommerauer B, Hanna K; PRIVIG Study Group; UBC MS/MRI Research Group.
Collaborators (42)

Rice G, Duquette P, Freedman MS, Panitch H, Coyle P, Vollmer T, Jefferey D, Strasser-Fuchs S, Rektor I, Stourac P, Havrdová E, Meluzínová E, Haas J, Hartung HP, Wolfgang H, Oschmann P, Kiefer R, Haller P, Tumani H, Gold R, Papadimitriou A, Komoly S, Jakab G, Harcos P, Vécsei L, Miller A, Wajgt A, Selmaj K, Stelmasiak Z, Kotowicz J, Constantinescu C, Cheng Y, Faber R, Han J, Lagroix L, Li D, Medina M, Riddehough A, Traboulsee A, To A, Yu R, Zhao G.

Department of Neurology, Medical University of Graz, Auenbruggerplatz 22, A-8036 Graz, Austria. franz.fazekas@meduni-graz.at

OBJECTIVE:

Several studies have reported a reduction of relapses after the long-term administration of IV immunoglobulin (IVIG) to patients with relapsing-remitting multiple sclerosis (RRMS), but they were mostly small and differed in terms of predefined outcome variables and treatment regimen. We therefore set out to test two different doses of a new formulation of immunoglobulin termed IGIV-C 10% for suppression of both clinical and MRI disease activity as well as safety.

METHODS:

One hundred twenty-seven patients with RRMS participated in this multicenter, randomized, double-blind, placebo-controlled trial. Forty-four and 42 patients received treatment with 0.2 and 0.4 g/kg of IGIV-C 10%, and 41 patients received an equal volume of placebo (0.1% albumin) every 4 weeks for 48 weeks. The primary endpoint was the proportion of relapse-free patients. The main secondary endpoint was lesion activity assessed by 6-weekly MRI.

RESULTS:

Baseline variables were similar in IVIG- and placebo-treated groups. After 1 year, the proportion of relapse-free patients did not differ statistically according to treatment (IVIG 0.2 g/kg: 57%; IVIG 0.4 g/kg: 60%; placebo: 68%), and there was no difference regarding the cumulative number of unique newly active MRI lesions (median numbers: IVIG 0.2 g/kg: 8.0; IVIG 0.4 g/kg: 5.0; placebo: 7.2) after 48 weeks. There were no significant between-group differences in the rates of adverse events.

CONCLUSION:

Although IV immunoglobulin (IVIG) treatment was well tolerated, this study did not substantiate a beneficial effect of IVIG in doses ranging from 0.2 to 0.4 g/kg. This result seriously questions the utility of IVIG for the treatment of relapsing-remitting multiple sclerosis.

PMID: 18645164

http://www.ncbi.nlm.nih.gov/sites/entrez
(thanks Agate)

Cherie

Hi Joe,

You are getting closer to the turning point, as I check off the days on a calendar for you.

I have been talking off-line with another lady who is currently going through this exact experience. She is about 3 - 4 weeks ahead of you, but she turned the corner to the "recovery phase" and is starting to feel considerably better.

Just a few more weeks till the worst is over . . .

BTW, did you go on IVIG?

Cherie

Hi Cherie,

I had to go back into the hospital because of panceatitus, was disharged yesterday........I am feeling NO better from this flare up.........no I didn't get the IVIG, neuro wants me on Tysabri and am currently in the screening process for that, I hope to get on it soon........you say I am about at the turning point huh?......Oh how I wish I was in the recovery phase right now this is really getting to me to the point that I have asked my PCP for some anxiety meds to get me through it.........

I still feel horrible but not as bad as I did with the pancreatitus........They did tell me that it MAY have been the Rebif that caused THAT........

My right hand is just about useless and my left isn't far behind.........this is horrible........:-(

Thanks for keeping me going Cherie, it really IS helping.......:-)

Joe

Hey, Joe . . . good to hear from you. Sorry the news isn't so great, but I didn't expect it to be quite yet. I was thinking more along the lines that you must be getting very tired of this now and you could probably use some encouragement.

Yeah, I had some internal things that didn't work so good when I went through this. It doesn't sound like for the same reason . . . but sorry to hear you are experiencing other health issues too.

The lady I was mentioning earlier (hope she doesn't mind if I share )... well, about a week or more ago she said she was going into her 7th week now . . . and although there had been a few improvements, she still felt like she was in the "escalation" phase of this attack (with some new symptoms). I told her to hang on . . . ANY DAY NOW it will change.

I didn't hear anything since then, but today she contacted me to say she's knows she's finally turned the corner, and is recovering.

This is about week 4 1/2 for you, but you are getting much closer now.

Cherie

BTW, you probably missed out on the latest Tysabri news while you were in the hospital, so I'll attach the long link:

http://neurotalk.psychcentral.com/thread51141.html

While Ty might still be a good option for you, it is highly unlikely to have any positive impact on the attack you are in at the moment. I think keeping things status quo (especially with the other potentiall CRAB-related issue you just faced) is probably an advisable choice of action, for the moment anyway.

These kind of decisions should be made with a clear head, IMHO.

Cherie

Joe,

Asking for some anxiety meds is probably a good thing at this point. If you feel like I felt during my almost year long "event," you're really, really frustrated AND depressed. All you see is yourself getting worse with no sign of it letting up. I know feeling like that all too well. It's a sucky feeling.

You don't want others to "pity" you. You want to be left alone but you don't. You want people to understand, but they don't. But most of all, you want someone who loves you to just pick you up and take you somewhere where you can be you again and feel normal. You get , scared, , sarcastic, , hopeful, , and all of it's exhausting.

I felt like I'd never come out of it. But I did. Slowly...... very, very slowly. Don't be afraid to go talk to a psychologist or psychologist. It CAN help you through it. If you do, see if you can't go to someone who works with rehab patients. Even a neuropsychologist would be great as they understand the effect of this stuff on your head, heart, and body.

Sounds trite, but hang in there. And that's not meant to be trite. It's easy to lose hope when you're feeling so cruddy. Find ONE good thing every day that makes you happy--a beautiful sunset, a bird singing, someone's kind words, something on tv, a piece of music, a passage in a book--just ONE good thing and write it down. Doesn't have to be long, just get it down somewhere. Then look at it when you start to feel awful again.

Sure, you're going to go, "Oh boy, what do I care about that stupid sunset anyway." occasionally. But you know what? It WILL bring back a vivid memory of that thing and maybe, just maybe, it'll make you smile. If so, there's part of a battle that's won. You had ONE good moment that day where you weren't thinking about your body and your future.

Hang in there, Joe. One day at a time. (Another sucky phrase, BTW, but it's so dang true even if we can't realize it all the time.)

The one thing that got me through feeling awful for so long were my friends on an MS board. They kept me sane, made me laugh, and understood.

Yeah, we got your back!

Good luck with the decision about meds.

Thanks Gazelle and Cherie,

I need all the help I can get, this IS the worst I have EVER been and I will take both of your advice and try and make it work for me.......I feel better already!

Joe

Yeah, well if any woman ever tells you that you have no idea about pain because you've never had to deliver a baby . . . you can laugh in their face. "HA!!!", you can say.

I have had two natural births, and was drip induced with both. I had 52 hrs or labor with one, and 36 with the other. Yeah, it hurt . . . but absolutely pales in comparison to a bad TM attack.

I think the hardest part is how long it lasts. At least with labor, it's over in hours to days . . . but with this, it goes on excruciatingly for WEEKS, and you can't escape it with pain relief. The other hard part is the "overstimulation" of sensations that are going on . . . the mind just goes on overload.

I was thinking the other day, they should probably just put us in an induced coma for about 6 weeks, like they do burn victims. When I have had other bad pain (like with the botched LP), at least I was so doped up I didn't know what was going on most of the time. Also, it's kinda like we have an out of body experience when we have very bad "normal" pain . . . but with this neurological stuff, there is just NO escaping it, it seems.

Just a week or two more, and it WILL get easier and easier from then on . . . .

Cherie

Dear Joe

I just saw this thread. I am soooo sorry you have to go through this.

I have no words of wisdom or advice. I just want you to know that I shall keep you in my thoughts and prayers.

I wish you a quick recovery and the strength to get through this.

God Bless!