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

LOL, I hear ya Cherie, months are WAY too much time to go through this.......on the GOOD side, my right hand is working better, not totally right YET but it IS working a little better......:-)

Thanks for the HOPE Cherie and you too Carolina, thanks for the prayers and words.........they are appreciated....:-)

Joe

Joe, just try not to be a hero and develop kidney stones immediately after you get better! That would only add insult to injury.

Aw, come on, Cherie. Childbirth is really painful--you gotta put up with the little buggers for 18 years BEFORE you can kick them out. TM pales in comparison.


Glad your hand's a little better today! That's a GOOD THING!

Hi, I need some support pleeeeeeeeeze. Ive had a really rough year and was diagnosed with anxiety and depression in July 2011. By end August 2011 I lost the feeling in my legs, groin and torso and was hospitalised for a week for testing. They found an area of inflammation on my spine at bra strap level and diagnosed me with TM. They also found 3 "silent" white spots on my brain which they said were indicative of MS. As you can imagine all this exacerbated my anxiety/depression to the point they were having to keep me sedated on Valium every day. However, after 3 days of IV steroids I was allowed home to recover. The neuro said based on my lab results I had a 60-70% chance of developing MS. Not what you want to hear really. Anyhow, cut to january 2012 and mostly my body was back to normal so I'm think great brilliant marvellous, now time to get fully mentally well and get back to my life. It's now may 2012 and all my myelitis symptoms have started again. My legs and feet are burning, my skin is so sensitive and I can only move around the house, I cannot walk any distance at all. I have to speak with my GP but is it normal to have a recurrence of this so quickly? I was just regaining confidence in my body and now I feel like I've been dealt another massive blow. I cry lots because I'm so sad that my life has gone this way. I have a good job which I'm at risk of losing due to sickness absence and my boyfriend and I really want to get married and start a family. I feel like the rug has been pulled out from underneath me. Can anyone give me ANY sort of encouragement? Will this episode subside like the last? I know my anxiety disorder makes everything worse so I'm hoping when that's sorted my whole body will calm down. God bless you all from this distressed Scottish girl :-) xx

Hello LisaLu, nice to meet you. I am sorry you are having a hard time. MS is a long haul disease, and most of the time it isnt diagnosed instantly. sometimes trying to control anxiety is like holding back the sea from washing on the shore. I am glad they are giving you good meds to help.