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

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

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 -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!

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. 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! 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.....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.

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