I do feel guilty once again posting on this site.
The horrible condition so many of you are in, reading some threads always rips my insides out knowing how crappy this disease is, knowing noone is in control of themselves.
It sucks. It really just sucks.
Im suffering migraines and unnable to just use my eyes as Id like too, and Im afraid other symptoms might be appearing, like my arms feel like fire and lead and dont want to be doing anything but hanging down.
I was certain my hand and arm problems might be arthritis related, but I noticed my stiffness usually was fine when I was working, but then my arms would get extremely weak and my muscles felt like, like ,I cant describe it, my arms just felt like they had enough.Ive been getting sort of a wasted feeling, like if I dont sit down and rest Im going to just tip over. Its very hard for me to describe. Ive never felt like this, and my pressure is fine, my sugar is fine, my muscles just feel tired.
I dont know anymore, Im confused, Im disgusted, Im very angry, and Im totally ****** off.
I gave in today and agreed with my neuro to go for IVIG. He feels I will have a completely successful reaction, but says nothing is set in stone.
Im waiting for my insurance company and his secretary to set me up. Im not looking foward to this, he almost knocked me off my feet when he told me 5 days, 5 FREEKIN days, in the hospital. 5 days, is that insane?
Im going to let them handcuff me to the bed or to a chair because me and being in solitary confinement for 5 days doesnt work out well.
Ive got manic energy that must be addressed.
This all sucks. Im not venting, Im just giving a total description of what I think of this disease. It sucks.

Alan

First and foremost DO NOT feel bad about writting on this site, we ALL have varying MG sysmptoms, some worse than others but that doesn't make yours any less important!

I too have days when it is just my eyes that are messed up and others where I can't walk up the stairs.

I think the Manic personality trait is in all of us MGers, I know I go insane sometimes {so Dr. put me on xanax}

I don't take IVIG but I really hope it helps you! The weakness you are talking about is what we all go through at times. And YES, it is hard to describe but we know what you mean.

PLEASE never feel bad about posting. I am glad you did!

I 100% agree with Joanmarie that you should never ever feel guilty about sharing on this site. It's for all of us. What you are going through is just as important as what any other person here is going through.

MG does suck--you got that right!

The feelings you described about your arms, you are right that it is so very difficult to describe, but the word, 'wasting,' seems right-on. It's almost like a very subtle vibrating, falling-asleep, shaking feeling. A feeling like your arms start to slowly increase in weight, and are so very heavy, but at the same time, so very weak.

I especially find it hard lifting them above my head, like so many others here. I wonder how many MGers it takes to change a light-bulb? lol...My mom is short, so I always have to change them, but she is always right by my side for when my arms turn to lead (my balance gets sorta bad when this happens). So it at least takes one MGer and one non-MGer.

Nicky

P.S. I hope that the IViG works well. I also feel manic sometimes- it feels like it correlates with the fluctuations in my illness. It's almost like compensation for time-lost, or who knows, maybe it's chemical. But I feel like when my speech is up and running, and the weakness has subsided some in the other areas, I gotta get stuff done, and plus, I just feel so happy- nothing like getting your strength back, albeit for a little while at least!

NIcknerd- the feeling you describe of vibrating, falling asleep shaking is EXACTLY how my arms/shoulders and face and well every muscle feels, you discribe it perfectly!!

[QUOTE=Nicknerd;606753]The feelings you described about your arms, you are right that it is so very difficult to describe, but the word, 'wasting,' seems right-on. It's almost like a very subtle vibrating, falling-asleep, shaking feeling. A feeling like your arms start to slowly increase in weight, and are so very heavy, but at the same time, so very weak.

and what gets me the most, is that I sat in that office for 40 minutes today since I went for IGA serum tests first, and was very early, and theres like 20 neuro's sharing this huge office, They have an entire section of rehab, MRIs, etc.........just a huge office, 15 people sitting at desks near checkin just on the phones, whatever......and so many people going in and out, like a train station,and not one, I mean not one of them, including me really looks sick.
I remember going to the orthopedic surgeons office, and it looked like we were all victims of a bombing. Crutches, wheelchairs, aids, and when they called someones name, it took that patient five minutes to get out of a chair and up to the doorway. These neuro diseases are silent mostly misunderstood torture. IF I had back surgery I wouldnt have to explain to anyone why I didnt feel like not going to a party. If I try to explain to that same person, well, my eyes werent focusing, I was a bit disoriented, migraine, just not feeling strong enough, they look at you like you are dissing them. You dont look sick, I want to punch the next idiot that tells me that.
Im just angry, Im sorry to the rest of the board for posting like this.

Neuro diseases are sneaky little rats, really disgusting diseases that show no mercy cause I saw really old people and really young people in the office today. And we all know most of them arent curable.
I recently found out one of my neighbors son in law (hes around 35) has MS.
A young, thin, muscular type guy with 2 young daughters and he has been forced to quit working. He doesnt look sick either, and I bet he wants to floor anyone that tells him that since they dont pass out when their body gets a little overworked.

I know what you mean, Allen...

Recently, I asked my aunt and sister if my speech is worst than it was when I was first experiencing symptoms (when my speech is bad, I mean). My aunt said, "To tell you the truth, I thought that it was psychological when you were first complaining about the speech issues. I thought that you were very upset and that was why your speech was sorta bad." Paraphrasing.

My sister said something similar. Before my speech problems began, I was feeling very sick for like a year and nobody believed me- family, doctors, work. I had the arm weakness then, and a number of other problems. Everyone thought that it was psychological, what I was going through. Even now, I still have a rough time with some family members, but most understand.

You're right that for the most part, this disease is invisible. For that we are unlucky because we have to justify ourselves all the time. I wish that those around us, who aren't already, could become more informed about the illness before they reach conclusions regarding where we should be with this disability. On the other hand, the disease is so variable, that even I get surprised when I can't do today what I was able to do yesterday.

Allen, It doesn't matter if someone with MG is doing great (which is motivating to hear about) or really bad (which means we can give support) or somewhere in between. We all need to vent and get support. I think it's the only thing that keeps someone with a disease sane!

That feeling in your arms is a warning sign. Ditto on what Nicky said. It almost feels like the muscles are "burning" when they get that weak. When I'm bad, I can't even pet my dog repetitively without having that sensation.

I'm glad your doc is trying IVIG. They want to make sure when you have your first go round of it that you don't have some kind of adverse or allergic reaction or meningitis or fluid/blood pressure issues, etc. That's why they "make" you stay in the hospital. Does opening up windows help with the trapped feeling? I dunno, can you open windows in a hospital?!

Make sure they test your thyroid if they haven't lately. Often something else can trigger your MG.

I hope I can bring up a couple things without getting you even more mad! If you have both anger and feelings of being manic, could you have a bipolar disorder? Just a thought. Not that anger isn't completely NORMAL when you have an invisible disease that no one gets and takes away your life.

My psychologist has been very good for me at handling some issues like control, injustice, anger, etc. I know that guys don't often want to see a psychologist or psychiatrist but it really helps. I often feel like I don't have control over squat and it is almost too much to take. Can't clean, can't exercise, can't afford jack, can't date, can't go out in the heat or cold, can't can't can't. That lack of control can make someone bust a seam open. So I get your anger, and I mean REALLY get it. PTSD can cause a kind of anger that you do NOT want to experience. A sudden, almost uncontrollable anger that is scary.

But my psychologist helps me a lot. I don't want this disease or former doctors or anything else causing me to feel even worse than I do. So that's why I go. And it helps. Sorry if that offends you in any way.

I really hope the IVIG works. If it makes you feel better and doesn't cause too many side effects, then that's good.

Sorry about how people treat you. I think it's really hard to understand a disease though unless you have one. Empathy only goes so far.

Annie

YOu would never offend me with speaking words of truth and wisdom, Im just at a point that I have nothing else on my mind except trying to get some relief of what bothers me the most.
Im putting alot of faith into what my neuro told me today, despite my feelings of fear and lack of trust of letting someone shoot stuff into my veins for 5 days.
I will report back after the treatment, hopefully less angry.

Hi,
I'm a 39 year old female. Prior to about 1 1/2 years ago I was an avid jogger, biker, dog walker, etc. I started noticing weakness in my arms and legs that would come and go, but sometimes it was bad enough that I couldn't hold a coffee cup or hold boxes or hold my dog's leash. I started getting a workup this past October, and had the office one-hour checkup with the Neurology clinic. He noticed nothing abnormal. Had a brain MRI - normal. Then lab tests came back with everything normal except my ACHR Binding AB, stated as being "equivocal". It was .33. Doctor said that is in the grey area, and is sending the blood tests to Mayo Clinic to further interpret. In the meantime, I am having an EMG with the shocky-things and the needle things next week. I am very, very frightened about all of this. He says it seems like MG, but I don't have any ocular problems, facial, swallowing problems, etc. I wonder if any of you could tell me what symptoms you started out with, how old you were, what your tests were like, and what life is like now. Oh - and a CT of the chest for this thymus gland thing - scary!
Thanks.
Laurie

Im sorry you might have this disease.
dont let stress eat you up, it will make you feel worse.
Im 55 and didnt have any sypmtoms till a little over a year ago, mostly ocular.
Im sure there are alot of women in your age bracket that can relate to you better, having similar symptoms, similar life styles.


I let it eat me up for months, depressed, the feeling of hopelessness, and it was all for nothing. I found help, in drug form, and I feel close to normal most of the time now.
this is a great place for support, so ask all you want and youll get alot of great advice.