IVIG-now Im just angrier
 

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.

:hug: Alan :hug:

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.:hug:

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!:D

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. :hug:

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.

Allen- NEVER feel guilty posting on this site, i do it way more:)

Its always somewhere where you can come and vent about this stupid disease.

Im not going to write much because im so tired. Yet i feel you 100 of the 5 days in the hospital, its lame. Especially for those with lots of energy because you cant do anything.

When I was in the hospital with my crisis a few weeks ago, i couldnt even walk, and that killed me.

So keep your head up, i know its hard when knowing your going to have to be in the hospital, yet you can do it, i know you can.

Keep us updated.

Allan ,every situation and person is different
 

I :grouphug::hug::)has only been with the help of people on this site that you can learn to question your treatment and ask for second opinions.
In my case I had an appointment with my family doctor today.
I told him I yes I had reviewed my case,my body,my life and concluded that I had slurred voice,weak arms ,right eye ptosis before I was diagnosed with mg
Since treatment started the cure is one hundred times worse than the problem.
Therefore I ,me ,by body has rejected the cure and have reduced my pred from 60mg.day to 5mg/day over christmas and the new year.
no Mestinon
all physical tests passes with flying colours.
gp had letter from nuro saying he is about to change me onto imeron.
Gp and I both agree he may have put me into remission ,
I have to go back this morning for fasting blood sugar check and BP .
Currently my BP has been reading 140/80-140/90 heat rate 113-133

Hi Allen
 

Never feel guilty about venting on this site. Ive done it many times. I find that usually only people with this illness that can truly understand how you feel. You can try and describe what its like to other people that you are close too, but they will never really get it as they dont live it.

Its like if someone else says they have a toothache, you can sympathise but you dont really know what its like unless you have had a toothache yourself, but you can only relate it to your own experience and maybe your toothache wasn't as bad as theirs.

I hope the IVIG helps.

Love
Rach