I'm so depressed!
 

:(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. :hug:

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!:hug:

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:D, if only we could all dislodge it from ourselves we may have a chance:icon_rolleyes:

Hope you soon start to feel a bit better, take care :hug:
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 helpful:(THen 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:D.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

Wow! Did you have all the classic symptoms? By the time I was diagnosed, I was down to 100 lbs. cuz' I could no longer swallow and had trouble - ok I stopped - breathing......scary stuff. I was so sad to hear that your thymectomy didn't work - everything I read when I was first diagnosed made it seem so easy - you have the thymectomy and the *poof* go into remission, which obviously is not the case......I was diagnosed March 6, hospitalized March 15, and then had my thymectomy on April 22...needless to say, it was a very fast month and VERY SCARY:eek:

The needle phobia truly is my biggest issue. I know it's illogical, and that is why I get so embarrassed, but I'm going to get help for it. It just doesn't make any sense to be so afraid of a little needle or cath, especially when they are being used to save my life, though the Prednisone has made me a lot more emotional and quite frankly, crazy, plus this lack of control is really hard to take for someone like me to take (total type A, Monk type), but I need to learn to chill......You had 2.5 years of being symptom free? How glorious! How wonderful! I bet they were the best 2.5 years of your life - did you get sick or something? Or is that common? (A couple of years of remission, followed by being sick again?)))) I just was so sick by the time I was diagnosed that I was woefully unprepared and just blindly believed whatever the docs told me and was willing to do ANYTHING to get better and I am in the sense that I can eat, walk, talk, swallow, etc., ....I just miss the "old me", but I guess I'll have to get used to my life now and appreciate what I have NOW:(.......I was so happy to hear you were able to overcome your needle phobia - there is hope for me! I'll have to take a "big girl pill" and just do what I have to do to make it through........Thank you for answering my thread - it really helps to hear from others like you:hug:

Oh yes, I was very very sick when I finally diagnosed. I'd weathered 2 mini-crises at home, had Heimlich done twice because of choking, etc. I went to 3 neuros right off who couldn't/wouldn't diagnose me so I got stubborn and stopped trying to find someone who'd diagnose me. I finally found the good neuro/clinic and have been there ever since.

I had thymectomy, and then REALLY got sick...ended up on steroids, IVIG, finally CC and then after a couple of years "poof" the MG went away. I still took the meds but felt very very good.

In 2004, I began trying to address some of the hormonal issues that have plagued me. By the fall of that year, I started having symptoms reappear, finally going full blown by October (on my freakin' BIRTHDAY!!!!) and I've been pretty much bad ever since. I've not worked much since 2001 and there's no way you could call my life "normal" in any sense of the word. HOWEVER, I work around it. I go on vacations, do stuff, etc. In fact I'm leaving for Cancun in the morning, double vision and all. I finally decided I couldn't wait around to get well to do the stuff I want, as I have a daughter who needs to do normal things as well.

Hang in there, keep posting and do your research!

Missy

Wow! That really stinks! I also went to so called "specialists" who told me it was my tmj, sinus problems, etc. and made me feel like I was crazy. Fortunately I gave a list of my symptoms to my GP (and she figured it out IMMEDIATELY) and sent me to my neuro - thank God! I think it's great that you are going to Cancun:)! I can't wait to take a break - it seems like all I do is go to dr. appts and then home or the hospital, but I know that will change soon:D -I've got to keep believing that! Fortunately I've got a great hubby and son (he's 16) who have been really great, though they are scared. It's been really hard on them and I just feel weird having them take care of me - you know how it is......Well, take care and have a blast in Cancun:D!

I will definately be careful with the prednisone - I'm down to 40 mg a day, but really miss 60 - I feel the difference, however I also just started taking cellcept so maybe that will help in the near future:D. I know this sounds really ignorant, but what does panhypopituitary mean? It seems like you have had a really tough time - how long have you been sick? What were diagnosed with first? I'm sorry if I sound nosy, but all of this is so new to me and you really seem to know your stuff:). It is so hard not being able to work - I really miss the day to day interaction with others. It gets so lonely here at my house and though my hubby tries to help out, he really doesn't know what I'm going through and I am sometimes resentful - sad but true.When you get a chance, please let me know what's going on and how you are doing. I really appreciate all of your help and knowledge:D! Erin

Hi Erin,

actually its cold here!! I was staying at my sisters, about 1/2 an hours drive from where I live, and we woke up on Thursday morning and the bird bath had a layer of ice on it!! My MG did not like the cold morning, but I improved as the day warmed up!!

am a bit tired today so will leave it here
take care
redtail

Don't worry about not knowing about what panhypopituitary means - heck, most doctors do not either. Pan = most or all, hypo = low and pituitary (but most consider it to be just to cause dwarfism, not other issues, sadly) so it basically means that overall pituitary function is low and since the pituitary is the master gland, well, things tend to not work so well.
I don't have a thyroid, adrenals, ovaries and part of my pituitary was removed - all surgeries as they had tumors, cysts or were diseased. But really I am I am fine... but the result is that I have to to take all replacement hormones and try to mimic what a body does normally so when I am sick or stressed, trying to guess what I need without causing further damage is just... and also there is just no really replacing what the body does naturally even though I take as many bio-equivalents as possible. But somehow I feel my whole day is ruled by taking medication.
It is lonely but... you can find ways to manage. Not being able to use your your muscles effectively makes staying at home feel bad. I have to get help cleaning even though I am here. I cannot do things I used to do like decorating and simple cleaning and even microwaving, I use a stool to sit on to wait and sometimes need a stool to stand on to as I cannot raise my arms high enough when I am standing on the floor.
I guess since this has been my case for a long time... I have started to adjust. I just go back to bed when I am tired. I don't fight it anymore. If I want to do something, I give up on bathing! I have a shower chair which helps as well as a bar so I don't fall out of the bath. I tend to choke a lot though - it seems my MG is high up.

Wow! I was blown away when I read your message. You've had a really rough time, haven't you? When did you first get sick? Do you have family to help you? I mean in terms of the surgeries alone, I don't know how you did it - you must be very brave, cuz' I flipped out over my ONE little surgery - I'm not kidding, for me it was very traumatic:eek:.....I was scared out of my mind. How many pills do you have to take daily? I take about 20 and that's just for my MG and other health problems, and they are nothing compared to yours. Do you have a good neuro/GP? I really hope so. I fuss about mine, but he has taken really good care of me and ALWAYS calls me back in 5 min or less - I even awoke from surgery to find him holding my hand (after my thymectomy).....Have you had a thymectomy? I had one April 22, but my hematologist told me he thinks I'm "chronic" - very depressing - especially since the surgery was so painful - transsternal - they found spots on my lungs and wanted to do a biopsy. It's so depressing when I can't get off the sofa or do anything. My son just has a really hard time with it b/c before I took care of all the "mom" stuff and was a mom with great work hours - no longer. I feel like I'm letting them (my husband and son) down and failing them when I can't care for them. They are my world. I used to watch my neice every day, now I only see her weekly and that's been hard on her too (she's only 6). Do you have someone there during the day? I just don't see how you manage - especially if you choke a lot. How old are you? I'm 34, but feel about 90:(.......Please let me know how you are doing when you get a chance. You can contact me 24/7. I'll keep you in my prayers.

You will feel better!
 

It can take up to seven days for the ivig to show improvement. I know my husband went for the series 5 plasmas and 2 ivigs for about 6 months before anything positive happened - and one day voila - he felt normal again. Unfortunately it only lasted for about a year and a half then it was back to square one - the last 6 months have ben bad - but we're still hopeful that he will have more good days! You must keep positive with this disease - we need to fight for more research!! Hugs to you

My neuro moved to Florida to take a new job... my GP alas, is one of those who is in and out in seconds but will run tests I want or give meds I want - I can be my own doc. He had a nice caring doc with him that was helpful but he left and frankly, I am just tired of looking for doctors (as again, I search).

I too feel like I let people down and my FIL thinks I am lazy as he thinks I look just fine! You would think that after 12 operations (one brain surgery) he would get the hint but no, he just calls and asks if I am better like it is going to change in a day - it is so aggravating. I have someone help clean, my husband helps cook or we order out or use the microwave if I don't cook. I got reachers, sit as much as I can and all that. I limit what I do or I have forced naps - my body will just shut off and I have to sleep.

The choking is no fun but they tell me that since I do not lose weight, it is not bad... so whatever you do - never get endocrine crud with this as my weight has never been dependent on my intake but far be my real body to interfere with their suppositions.

Hang in there and like Janet said the IVIG takes time so hopefully you will find it makes a difference! It also does seem to come and go so it never seems to stay the same for long - for good or bad.

Unbelievable! Your FIL sounds like a real jack%^& - pardon my french.....I cannot believe how insensitive people can be - they think cuz' we "look" normal, we are and are just being lazy. I've grown apart from my own baby sis cuz' she hasn't shown that she really cares at all and says my doctor gives me the right to be lazy - right! LIke I would live like this if I could.....My life has been forever altered by a disease that the medical community really knows nothing about, I can barely get off the sofa - yeah, this is what I want. Or she claims that I'm trying to be the "favorite" - it breaks my hear b/c we were always so close, but what can you do? I really wish you lived here - I swear by my neuro - he's ****, but really seems to care. It's such a shame that more doctors don't - -especially since we need them to keep us alive and (somewhat) mobile:(. You have had 12 surgeries? Good Lord! If you don't mind my asking, what for? Is one of them a thymectomy? I kept hoping when I got mine it would *magically* cure me, but nothing yet..... Today I started out strong, but started to feel really bad during the day and still feel a little rough - maybe tomorrow will be better......I've got to say, you are one of the bravest people I have ever talked to. It is amazing that with all you've gone through you are still so upbeat. I don't know if I could do that, and I truly admire you for it - though it's awful that you've had to deal with so much:( I just don't know how you do it. I was a nervous wreck with my one surgery, so the thought of 12 makes me sick to my stomach. And the choking! That is another big fear of mine. I choked when I was a little girl and refused to eat for a long time - so long my parent's worried and I lost a lot of weight. I finally got over it, but it took about a month - a long time for a 5 yr. old........You are not letting anyone down - you are being let down:by your doc, your FIL, and anyone who doesn't take care of you - remember that! I meet with my endo 2morrow - wish me luck. My body is still *out of whack* - at least for now..... Erin

Oh no, no thymectomy. The CT came back and said only moderate tissue. My husband just laughed. ALL my imaging has been incorrect so there is no talking to them but just a few examples - my pituitary MRI for 12 years said 1 tumor on the left... in the end when they did surgery, there were two tumors, one on the left (actually, it was ALL over), and another one on the right. When I had my adrenals removed, I had a CT the day before and it was normal. They were removed and were at least 2x normal size. I had post op pain and so had another CT - the report said... my adrenals were *unremarkable* [this was really stupid since I was there for post op adrenalectomy pain - hello!!!]. Even my hysterectomy imaging missed significant crud that was there and my doc was amazed at all the stuff that was really there and that they missed adenomysis as well the extent of the other stuff they knew I had... he said I was long overdue and was sorry he argued.

So no, I am not going to get a thymectomy (not really bucking for #13 though...) but who knows what is really there.

Ah the upbeat... counts against you... they think personality is health you know... I have a very warped sense of humor to cope - it is the only thing I have left. Thankfully most do not get it but after my pit surgery, I got my surgeon to give me a picture. I sent it out at xmas with a santa hat and eyes on it (the tumor was the beard, the pituitary was his face) and only one person got it... tee hee... on our little xmas update... Now I do not even have the energy to send out cards. But I have lost a lot of weight so everyone thinks I am fine. Fine fine fine fine fine. I look Good! Makes me want to scream.

I must have a renegade dr or something, cuz' there was nothing wrong with my thymus - other than being a little small, so I don't understand why it had to be removed, but that was concensus among all my drs that it needed to go and "stupid me" I was desperate and did it - I would have done anything to get better - anything! So here I sit with a 6 in scar on my chest and 2 gross spots where my chest tubes were:mad: .I still wake up in pain if I sleep flat on my back. Still take 2 pain pills a day - dont want to end up a pill popper, but need them to get through the day........My blood work was a little better after the thymectomy, so you never know - my antibody levels were over 600 when I was admitted to the ICU..should be .04 per my doc.....in short I was really sick, though nothing compared to you........I just don't see why they won't listen to you - you know your own body - you know when you feel like crap - I wish our docs could have our problems for one day then they would understand what it's like to be sick and scared and ignored....:(Today has been a bettter day; my son aksed for 7 eggs over easy, picante, toast and chips for breakfast - he's 16 and 6'2" and I was able to make it for him,so I feel pretty darn good! I just love taking care of that kid! He drives me crazy, but he is so much fun. And he has been so scared b/c I always took care of him before and now I have to tell him to "man up" and take care of himself most of the time - I hate that. Your hubby sounds like mine - we are really lucky. A lot of people simply cannot handle taking care of someone that is chronic and take the easy way out - we are really lucky! Mine is already trying to plan a vacation and I am in no condition to do so - for him it's a release, an escape, for me just more work and stress, so I'm fighting tooth and nail - he wants to go Alaska but I refuse to be that far away from my doc - what if something happens? I would be up a creek.........Now my doc has proomised that I won't have another crisis - that they will catch it in time, but the last one scared me so bad that I just want to take it easy- do you think that's dumb? I laughed when I read about your xmas card - you have one great sense of humor lady. I can totally relate.That's like something I would do, so I really thought it was clever.......hee hee:D You know when I was in the ICU the nurses were questioning whether or not I was even sick - they said I looked to "good" to "healthy" to be ill - what a joke. They kept asking me what "type" of testing I had and if I had tested positive - let me tell you, I went to many drs. and my surgeon said my diagnosis of MG was the most comprehensive he's ever seen and he's been practicing over 25 years, so I KNOW they did all the right tests........just makes me want to scream! WE "look" normal so therefore we are - what a joke. Take it easy and wish me luck today - I have to see one on my many specialists and it scares the bejeebies out of me - I hate blood work! It hurts and scares the crap out of me! Erin

Ah, well I only have a um... supposed diagnosis right now of MG (maybe I should not be here!). I have no antibodies - no musk, no achr, and I failed my EMG... my eyes are fine... so I am not really feeling the MG love so to speak but I failed an SFEMG to the doc said AHA you have it. So they gave me mestinon again which just made me drool and twitch (hubby loved it... not) and then the IVIG which almost killed me and then said, get this, you are MILD, so we are just going to let you stay this way... and when you progress, you find another doc - and he moved to FL. I keep choking - even when I am just sitting back and watching a moving and swallowing is getting to be an issue, so now I am on a doctor hunt. Both my shoulders have been frozen since shortly after my adrenals came out (Dec 2005) so I am fairly useless at home but I don't know of many others that have that issue. I was they think, self treating, with my own steroids (how freaking NICE) with the Cushing's as that is an over-production of corticosteroids and so when that got cut off, my muscles went kaput. So I went from one problem to another.
My muscle biopsy (alas, another scar) show atrophy... I try to do things but... oh well.

Sounds like a nice breakfast! I hope you got some. Good luck at the docs! I see an endo today... fun fun not.

Hi, Erin....I'm hippiechick; haven't been around here too long and I think I'm catching on a little bit....anyway, it sounds like you've really had a HORRIBLE time. I'm so sorry. I know what some of that is like and it really bites big time!!!! It just seems like it can't get any worse sometimes and then -

Hey there!