Hello all! I'm sooooooo depressed today. Last week I was feeling a little rough so I called my neuro to tell him what was going on and the next thing I know I'm being admitted to the hospital for a week long stay of plasmaphoresis and then IV IG and I STILL DON'T FEEL GOOD! I ACTUALLY FELT BETTER BEFORE I WENT IN! I've been on the sofa for the past 3 days just feeling sorry for myself, too weak to do anything, worrying about EVERYTHING and praying for a miracle..........MY hemo wants to put a permanent line in my arm cuz' he thinks I'm chronic, but I refuse to believe that. How can things have gone downhill so fast? I was feeling great for months! Now I'm scared to be alone, scared to do anything, for fear it will wear me out too quickly and I'll have to go back to the hospital - I was never afraid of anything before I was sick. I just took for granted that I'd always be healthy............Sorry for whining - I just don't know where to turn to right now........

Sorry to hear you are so miserable...your feelings sound well deserved.

Don't know what to tell you, as nothing really works for me, either. I'm not "as bad" as I was a year ago, but still no healthy person would want to trade with me, even for a day. For me, no matter how wonderful the treatment, or how MUCH of the "wonderful" treatment I'm on, I will still flare up during hormonal shifts (ovulation and menses.) There's no getting around that and I must say, I'm a bit curious as to how life will be after menopause (which is still a bit away for me...)

Hope things get better for you very soon!

Missy

I am so sorry your not feeling better. You've had a rough ride these past few weeks. I am praying that this is a rough patch and you'll be feeling better in time.

Thank you! I know I must sound like a "pitiful pearl", but I jsut keep hoping/praying for a miracle.....The problem is I just keep getting sick since my thymectomy and I know it is hindering my remission, plus no one wants to hear that they may be chronic....When were you diagnosed? Have you had a thymectomy? I had one b/c the doctors pretty much told me that was my only hope for a "normal" life.......it's just so darn frustratingThe meds I"m on keep me in a permanent state of menses and I have terrible endo, although (God willing) I'll never undergo surgery again - it's just too darn hard. I'm on antidepressants though they don't seem to be working for me and I can't stand the side effects. How old are you? It's just so hard sometimes, though I do know I'm lucky to have my support group. i'm so thankful I found this site cuz' everyone is so kind. Take care! Erin

Thank you! I do know it will get better in time, and I do know my doctors are doing everything they can to help, but it just gets so frustrating @ times........Prayer and lots of luck will (and faith ) will get me through........though I am so thankful I found this site - everyone is so kind to me. I really appreciate it!

Hi Erinhermes

sorry to hear you're feeling down. Its frustrating when you do so much, or have so much done for you, and you don't get any results!!

I'm going through a period of my mg being bad, and don't know why, and dont want to tell my neuro, cos he'll just want to up my prednisolone!!!! I still think my idea of selling our mg on e-bay is a great idea, if only we could all dislodge it from ourselves we may have a chance

Hope you soon start to feel a bit better, take care
redtail

The irony of that whole situatuion is that I called my neuro to have him up my Prednisone and he decided that at this point plasmaphoresis would be more helpfulTHen I asked him him if I would have a PICC or a central line and he told me PICC so that's what I was expecting - not a cath in my jugular - I tell you I went a little crazy for a few days after that - screaming @ my hubby (cuz' he knew), being mean to nurses, crying, and not sleeping - I was like a mad woman - I'm so ashamed.I've just always had a fear - ok phobia - of needles and since being diagnosed I've been bled dry...........OK, enough about me - how are you? I'm sorry to hear you're feeling rough - that stinks. Your idea of selling mg on ebay was funny - I wish there were buyers out there.Maybe the heat is effecting your mg..............
Is it super hot there? We've had a huge heat wave here in Texas, and I think that's what is making our mg worse - my neuro won't let me go outside in the heat......... When you get a chance, drop me line and let me know how you are feeling.......Take care! Erin

Hi,

Some facts about me: I'm 45, diagnosed 9 years ago, symptoms for 10. I had thymectomy in 2000. It didn't work, clearly. A little hint: They hardly EVER do!

I also have lots of hormonal/gynecological issues. Attempts at manipulating the hormone levels have ended in disaster every time.

How long ago were you diagnosed? If it's been less than 2 years or so, everything you are going through emotionally is "spot on." It takes some time to grieve the good life we've left behind and make peace (I still won't say accept) with the "new you." The new you may very well be chronic. However, you may be lucky as I was several years ago when I had 2.5 glorious years of being symptom free. Of course I've had 4 years of hell since, but I keep striving to achieve that perfect balance once again. It's tough because it isn't working!!!!!

The needle phobia really seems to be one of your biggest issues. I suggest you get some help for that, so you won't be living in fear so much all the time. I have a similar phobia but now, believe it or not, I access my own port at home and do my own IVIG! So, I am living proof that it can be overcome!

Hang in there....

Missy

Just be careful with the prednisone - you just cannot quit - the adrenals will fight back and not in a nice way.
I also have a lot of hormonal issues. I am panhypopituitary so I take replacement hormones for practically everything so every day is a balancing act. It is not easy to have hormones out of whack and then have this as well - as I do not have adrenals - I will not take steroids (it would rob me of the ability to control myself in times of illness).

I am not able to work and it gets me down too. I am too weak. My shoulders have been frozen for years. But I try to do a few things here and there and try to help others as I can in cyberworld. Like you, I cannot get answers either. IVIG almost killed me. I have to try to find new doctors now. Starting over - bleah. Hang in there - you have the right to be blue - there is a lot going on. Reach out - there are many of us in boat.

sorry to hear that you are down hope you feel better soon ali