New to "this" forum
 

I feel like I'm cheating on Brain talk, but it seems nobody's out there anymore

I'm propped up in my bed, ****** off about my weekend in the ICU for respiratory muscle weakness and dehydration. I slept most of the day and can't concentrate enough to get any work done.

Walking to the bathroom gets me short of breath and my neurologist hasn't called me back (the covering MD this weekend didn't want to do anything because I'm not officially diagnosed (I'm probable MG), didn't get any worse over my ICU stay (didn't improve either).

I'm now just hoping the IVIG I had on Wed and IV fluids I got this weekend kick in and get things back to baseline.

How do others put up with this crap?

What is the threshold that will get my doc to try something (I'm also on Mestinon, without which I would likely not be breathing)?

My inspiratory and expiratory pressures are down (I was told that I currently do not have much reserve), but I didn't want to stay in the hospital where they weren't going to be doing anything and I couldn't get to sleep. After 3 days they always want to change the IV site and it took 7 sticks to get the one I had anyway. At least this way I won't pick up a hospital acquired pneumonia. The docs agreed, telling me to call my neurologist and he would do something...still waiting for that to happen (not holding my breath):rolleyes:

I have an appoint at Hopkins in the end of July... I guess I just sit around letting my muscles waste, hoping I don't get a cold until then.

welcome to nt eeyore. i don't know much about mg. i hope to see you around some of the other forums here and get to know you. i fyou need any help with the features we have here, just post them here or send me a pm or a visitor message. ( just click on my profile to find that)

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Hi eeyoure2,

sounds like you're having a really rough time of it at the moment!!
I really hope the IVIG, and fluids start to kick in soon!!

I've been diagnosed nearly 6 years, and still struggle sometimes, I hope oneday I can get to where my doctor thinks I am at the moment:rolleyes:!

At the moment I have a cold, have had it for about 3 weeks, and am much better, but my sinus's are still icky and I sometimes feel like its a bit hard to breath(nothing dramatic, just a bit short of breath) But I really don't want to go to the Dr(GP), cos they very rarely can do anything, and I'm sure he'll put the breathing down to "being stressed:rolleyes:" So I'm hoping this cold will just dissapear on its own!!!

On April 25 I was so excited I said to my big sister "wow its been a whole year since I've been in hospital, wow how exciting" I find it strange I can get so excited over something like this!
I have a wonderful family who help me get through all the stuff. I did have a dog up to about 2 months ago, but hes gone to a better place, I still miss him, he was a great help.

I think one of the most frustrating things at the moment, is my typing, I use to be fast, at the moment my fingers are slow cumbersome and make lots of mistakes!!

Sorry to go on and on, guess I'm having a bad day, so here's a hug, hope things start improving soon :hug: :grouphug:
take care
redtail

Hello eeyore. Welcome to NeuroTalk from me as well.

Thank you for welcoming me to the forum.

Redtail...I almost made it 1 year hospital-free... short by 2 months...and when I do I will be celebrating.

I'm beginning to feel that no one can do anything anyway...my patience is very frayed. I called my neurologist yesterday to let him know I was in the ICU over the weekend and now home and still breathing crappy and needed to follow-up and wanted some sort of plan (I left a message), but I've not heard back.

I'm sorry to hear you have a lingering cold...this year I started using Zicam (homeopathic) with the believe it wouldn't help, but couldn't hurt, and I got way fewer colds--you have to use it at the beginning of the cold though, so its not much help now. I hope you feel better soon.

I seems to have a litter more energy this AM, however I burned through it real quickly and am now on my butt again. :thud: This all really sucks:Sigh:

Welcome, Eeyore. Sounds like you've got real issues there for not being diagnosed with >something<. I just started my "Quest" about the first of the month. So far the Doc hasn't called back. Head MRI, Doppler Ultrasound on the legs. Nothing in the MRI, probably nothing on the Doppler.

My involvement is very minimal at this point, relative to the others in here. Speech only is clearly affected (very pronounced slurring after talking too long, 3-4 minutes). Leg strength maybe impacted too, but not enough for >me< to say for sure.

Good luck to you down the road....

New to site - hope you are doing well
 

Hey there! I'm new to this site and new to MG but was thrilled to finally find a place to vent! How are you feeling today? I know it's frustrating, but try and hang in there. Were you diagnosed with MG? I know it's scary, but at least this illness can be controlled (if you have a doctor who actually knows what they are doing). I spent 9 days in the ICU for my crisis (couldn't breathe) during which time I was given my IV IG (400 mg or whatever a day for 5 days), blood ( I was waaaaaaaay anemic), and steroids - it made a world of difference. Don't get me wrong - I still have really bad days, and I thought I'd never recover from my thymectomy, but it does, and I did. Did the hospital offer you a picc line? That (for me) worked great! I'm terribly afraid of needles and figured one stick was better that 20. It hurt going in, but I think it's b/c I was just so scared and dehydrated. I'm currently on steroids (60mg.) and Mestinon (420 mg daily) - they have been life savers, though the steroids make me a little crazy sometimes:)

I did have to have a second round of IV IG before my surgery, though that time it was outpatient; I had the picc put in again though and just went up tp the hospital every night for 4-5 hours for 5 days, plus my doc upped my steroids to 80 mg. for about 2 weeks before the surgery (he was worried about my breathing). The thing that scared me the most was being intubated - that sucked! Sorry to go on and on, but this whole thing is new to me........ Take care! Erin