NeuroTalk Support Groups - IVIG-now Im just angrier

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- - IVIG-now Im just angrier (https://www.neurotalk.org/myasthenia-gravis/111694-ivig-im-angrier.html)

Quote:

Originally Posted by allen L (Post 606706)

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.

I too have IVIG for 6 months now. The bottles get delivered to my house and the nurses come to me for the treatmnts. They do help.;)

Quote:

Originally Posted by allen L (Post 606706)

I know what you mean about the weakness and wanting to tip over as well, just folding laundry makes me so tired. i had 8 right sided infarcks
when i was just 14 years old. i was being treated for headaches, and the medication they gave me caused a blood clot in my right coratid artery. when i had thestrokes, i spent an entire 8 months in the hospital, because along with the strokes i had bactial meningitis. learning to walk again was tough. and i delt with severe spasims and contractions in my left leg. i had 5 sureries by the best surgins in the country and still, i had no relief from the evry day, every second, torture. i just started on gabapentin. and after 7 years of trying to deal with the pain, its gone! my foot still can not relax (looks like a club foot) but the pain is gone. I always felt alone in my struggles. finding this website lets me know im not alone. and neither are you. ive delt with this since i was only 14. so most of my life ive been a stroke victim. trying to live a normal life is impossible. the weakness drives me insane as well, i have trouble arryng lifting my 4 year old daughter. i hae touble with everythig that involves walking standing, even sitting is uncomfortable. until this medicine im on. im only on da two, and i feel no pain!! i though there would be no end to the pain and aftermath of having 8 strokes, but there is always hope. i got to the gym n try n streghing my arm n leg. in hopsthatone day i can get over what happened to me. dont give up!!!

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.