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Senior Member
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Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Senior Member
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Hey Kathy! Iknow what you mean about the side effects versus just being able to "live normally" again - it's a catch 22. Hopefully you won't go through the crazy mood swings ( I was always high strung to begin with, so they DID NOT HELP IN THAT AREA). MY poor son and hubby never know when I'm going to be my normal self or a crazy lady; trouble is, neither do I  It's just so damn hard sometimes. This disease is just so unpredictable. That's the hardest part for me. I'm a self confessed "control freak" and this has just thrown me for a loop. The only good thing to come out of this is meeting so many nice people , all of whom seem to actually care, and being able to vent! I also find myself not wanting to leave the house. It's just too hard sometimes. I mean I'll think I look "normal" and then someone will remark to the contrary. They are not being mean, they are just shocked at my appearance - you can see it on their faces, and that really hurts. I've always had droopy (or hooded, as I like to call them) eyelids as well, so to me that wasn't a major concern. What finally got my attention was when I could no longer see/swallow/chew/walk/talk. It all happened so slowly though that everyone (myself included) just thought I was either depressed/lazy - one of my docs thinks that it had been coming on for at least 3 years, though my illness brought on a crisis..........I didn't have any abnormalities in my thymus either, but all of my docs agreed having it removed was my best hope at returning to "normal" life - it was really scary, but my blood work came back slightly better after only a few days. Mestinon really is the wonder drug! I remember how I felt when it first hit my blood stream - I could swallow ice chips for the first time in months and am still hooked on them. I could NOT believe the difference, though I really started to feel better after my IV IG - that felt great! I 've had 2 and hope to never have another (only b/c I hate needles). What is Azathioprine? Is that some sort of steroid? I'm on 420 mg. of Mestinon and 50 mg. of Prednisone daily, all of which make a HUGE difference. Before, I couldn't get out of bed or do anything for that matter. Have you noticed any unusual cravings? I crave whole milk 24/7, as well as juice (orange/cranberry),baby bananas, and some other really weird food combos (sour cream w/hot sauce) and can't even look at other things like soda (I used to drink @ least 4 a day), coffee, or spicy foods (my favorite thing before I was so sick) - it's like being pregnant - weird! I think one of the hardest things for me is how other people responded to my illness. People that I had known for years suddenly disappeared. That really hurts. Others however have been amazing. I guess you really find out who your friends are when the chips are down. Also, sites like this one are a major thing for people like me. It has been amazing to share stories, laugh and cry together b/c so few people know what we are going through. When you get a chance, give me a buzz and tell me how you are doing!
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Originally Posted by Scots Kat
Hi Erin,
Yep, I've got all the sexy side-effects you've mentioned - major moon face, swollen belly, facial hair, and massive stretch marks all over, luckily I've not had the emotional symptoms - no craziness yet (maybe I should warn my husband though). It's frustrating because I'm so grateful for being able to move around without help, but mad about how I look. I know it shouldn't matter, but as a 29 year old woman why do I have to choose between functioning normally and looking human!?! I feel guilty too all the time because I know there are people so much worse off than me, not just with MG but cancer etc etc, but why can't I be healthy too?!? My husband has only been to the doctor once in all the time I've known him and that was when he broke his hand playing football!
I know what you mean about not being recognised - my husband and I live in Scotland and we just came back to Canada for a visit this week, when I got off the plane my mother in law barely knew me - she burst into tears. My parents were more prepared because they've seen the swelling gradually get worse on our webcam. Now that I'm back in Canada I find myself not wanting to leave the house because I'm embarrassed at how I look and I don't want to run into old friends who don't know I've been not well this year. I've never been a superficial person, but I certainly sound it now!! Sorry for complaining!!
On to your questions - I was diagnosed about 6 years ago. Looking back at photos I've had droopy lids since about 16 and I have another eye condition which causes double vision so I didn't pay any attention to that symptom. When I was diagnosed I didn't show any signs of an abnormal thymous so I've not had a thymectomy - although I really want it re-checked. I LIVE on mestinon!! I take 60 mg every three hours and on my non-steriod day I find I am counting the minutes until I can take my next dose. I can really feel the difference on the alternate days. I'm also taking Azathioprine (150 mg daily) and it seems to be kicking in now - it took about 7 months to start working. I've had one dose of Ivig, but it didn't do too much for me - in fact I was pretty well knocked out for a week.
It's nice to share stories and experiences here - I figure if I can laugh about some of this stuff then I won't cry!! All the best!
~Kathy
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