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

Allen, if IVIG works, I've heard it is like "magic". If it doesn't work (and mine didn't) -- I suffered all night long (I have migraines, too) waiting til morning to contact my neuro to see what I should do. He told me to go STRAIGHT to the ER -- for a CT scan -- and to get Demerol and Phenergan via IV. The ER physician knew NOTHING about MG (I was 1 1/2 hours away from my neuro) tried to give me Morphine, too -- AGAINST the orders of my neuro. Fortunately, the first tiny push of morphine made me NAUSEOUS -- a smart nurse STOPPED it immediately. I later learned that it could have killed me -- I am Bulbar -- prone to severe respiratory problems.

Long story SHORT -- if you are gonna have problems with IVIG -- you WANT to have them IN THE hospital WITH your NEURO nearby!!!!!!!!

I don't think that they will MAKE you stay IN the bed -- they will just want you IN the hospital where they can keep an eye on you. When I was getting IVIG in the infusion center, I was able to walk around and roll the IV pole with me -- to go the bathroom, etc. Five days is a LONG time to get IVIG -- they will probably only give you a drip for a couple of hours per day. SMART doc!!! The slower the better -- the less likely the chance of a headache.

Allan,
I have had IVIG treatments and the results are WONDERFUL! I hope that it works for you. The first time I had was during a crisis but the doctor said that it is normal for the first treatment to be done in hospital. They want to monitor you very closely to make sure that you don't have any adverse reactions.
We need the support of one another, so please post and let us know how you are doing. Take care ~ Melanie

Thanks, Melanie, for posting after me. My post seemed like such a "bummer".

Allen, MOST MGers really seem to benefit from IVIG and LOVE it. I'm QUITE jealous!!

I loved my infusion center and my infusion nurse -- was so looking forward to the monthly visits. I just knew that this was going to change my life.

Allen, I'm looking forward to hearing about YOUR wonderful results!!

after my neuro told me he feels Im going to be 100% relieved of my symptoms, I looked up IVIG again and read a little about it.
Seems if its given in the first year or year and a half when disease shows, works faster for patients.
Im very uptight anticipating having to go into a hospital voluntarily to let them pump my body with others people stuff, knowing full well I can have a ton of different reactions, suffer weakness, headaches, fevers, chills, and do it all for 5 days and get nothing out of it.

ofcourse, alot of my fears and problems with hospitals are related to my past experiences.
Humiliation and loss of dignity are things Ill never tolerate again.
shoulda seen a look on the young nurse when I took my hand and slammed the door closed after she told me to walk to the procedure room down the hall, past patients, family members, staff, (colonscopy) in a gown made for womans small, and IM a 2x sized man. My junk was hanging out from the bottom. She thought I was being picky, so I showed her when I stood up, and her response was noone is going to be looking. so I slammed the door closed as she decided to walk out of the room on my statement of loss of dignity,and I held that door and told her fine, you take off your shirt and bra and walk thru the hallway with me, this way most people will stare at your nakeness and not notice mine at all!
She came back into that room in 30 seconds with an appropiate garment for me to wander out in public. This is a problem I have with nurses and technicians who work with so many people they regard them as meat, or wallpaper.
If anyone reads about an irate patient that accidently threw a nurse or hospital staff through a wall, well, youll all know who it is.
Im going in with a good attitude, I will not let past experiences influence this one.
Again, Im sorry if things I say offends anyone, its not my intentions, I just really dont like any of this hospital and transfusion stuff. First time in my life, Im scared of something, not easy to admit.

Allen, I am really sorry to say that you are making me feel MUCH better. I had gotten to the point that I believed that ONLY women received "crappy" medical treatment. So glad that you have set the record straight!!

I'll keep my eyes open for you in the news :eek: -- just kidding :D.

The way it works with me -- if I WORRY about it -- it won't happen. So, based on my experience, you are bound to have a lovely, carefree, and PRODUCTIVE IVIG!! You'll probably feel like Superman after this is all over!!

Hey, thought I'd set a bit of my 2cents into this matter.
First, I have been getting IVIG fro the last 4 or 5 years now. I started out every two weeks and now have an infusion every Monday. Since my resp failure in Jan 09 I have been deemed "homebound" and so can get the IVIG at home now. I used to have to drive to the infusion center here in town and sit for hours while it infused.
Ivig is not the cure all for me, but it is a very helpful component in my treatment "medley".

I have had only ONE reaction from IVIG in all this time, my rate is 150 and has been for a very long time. Well I said to the nurse who has done my infusions forever, how's bout we bump it up to 200 and see how that goes?? Well, bad idea!! got the worst headache for two days!! LOL

This brings me to one of the very important keys to IVIG success/no negatives. RATE RATE RATE!! Like buying a house is location location location, IVIG is very rate dependent as to whether you'll have problems with it or not.

They need to start out at 25 for 30 mins, then up to 50 for 30 mins, the to 75 for the duration. If you feel anything out of the ordinary, have them back off on the rate!!

You will have to be vigilant with this. Most floor nurses have no clue what they are to do with the IVIG. If they have any experience it's usually with a single injection of IVIG post exposure for some diseases. Your doc should have a protocol for them. If he doesn't you need to put your foot down and get the above rates.

Next, remember location location location?? Now ya got that, so moving on to hydration hydration hydration. You need to drink and I mean drink till your eyeballs float. This helps to keep things "thinned down" as the IVIG is very viscous or thick. So you need to make good friends with a water bottle. Think in terms of liters not glasses of fluids.

I will usually drink near 1 gallon before during after a single infusion. So if you love any particular drink take it to club med with you to ensure you'll be able to drink enough.

Oh and not to be forgotten, MOST people premedicate with a benadryl and two tylenol. So ask the nurse about that. I can get a little itchy if I forget the benadryl. It really does help to have both.

SO remember: RATE HYDRATE PREMEDICATE! *just noted that rhymes!*
(ok so won't quit my day job for poetry writtiing)

I wish for you a very smooth admission/progression/treatment. And I pray that the IVIG is just the ticket for you!! Many people have done this successfully and done very very well.

Know I am praying for you!! Feel free to email if you have any questions/concerns/or just wanna talk with someone who's been there done that and doing well!!

Hugs
Deb

after spending a week reading about Ivig on the internet, whatever sources I found, Ive never been so uptight as I am right now, knowing they are calling me to come in tomorrow morning.
Ill report live from the scene if they let me.

Good luck, Allen. We're all pulling for you. :grouphug:

I've never had IVIG, only plasmapheresis which was just last month.

Hey Allen,

Good luck tomorrow! I'll be keeping good thoughts.;)

Hugs,
Pat

Angst. :mad:

I guess the people at the hospital dont get it.
I was told to sit and wait by the phone until they called me up today to come in.
I forfeited a days salary, not to mention I had to have my wife take off 2 hours this morning to handle something for me, since I knew the hospital would call my home and not my cell.
And at 2:30, they called, and I was told no bed available, maybe tomorrow.

My eyes are starting to get tired now, as is other parts of me, so Im hoping the hospital is happy knowing I lost a day of salary and sanity waiting for them to tell me I cant come in.
This crap never gets any better.
This all sucks. I dont like hospitals or anyone that works on the administrative end, and I pray the staff administering this soup is better at human relations than the admitting office. Yes, I understand its not their fault, but Ive paid my freekin dues, Ive given up part of a normal life, and this is just one more lousy nail.
Im sorry for the rant, hope you all are having a better day than usual. I wanted to update on my IVIG treatment.

Allen,

Let it out.. thats what we are here for. I remember when I was going to have my thymectomy they did the same thing, sit by the phone and wait!

We know how stressful it can be, but I hope when they do call the IVIG helps you.

Please continue to keep us updated :)

Its obvious myasthenia and IVIG treatment are not regarded as any type of priority in a hospital setting.
Im a bit turned off knowing this before I go in, since I cant imagine any of the nursing staff or other staff having much regard for this type of thing either, since patients are given last priority on admittance.
Im now discouraged as to the care and respect I will receive as a patient, and trust me, I need very little of either to make me feel welcome.

Hi Allen,

I kind of know what you mean, when I questioned the chair I would have to sit in all day, as I was only a day patient, they said "well it lays right back"
I just said "uh hu" they obviously have never known anyone with mg, cos sitting in a chair can be very tiring. I did try to explain this but to no avail.
The nurse who looked after me was however very nice and caring, couldn't fault her at all, and she did understand when I explained, but said she was powerless.
If I have medical insurance however, I'm sure in a private hospital I would get a bed!

I hope your experience is better than what you expect.

I have not heard anything yet, its 11:40 am, just posting the update.

tick tock, tick tock, 1:30 pm and I know they realize they are in the highest volume traffic area in the NE. In 30 minutes, traffic could take me over 2 hours to get there, Im sure they realize this.
Im uptight and uncomfortable, not good to go in for this kinda stuff.

:hug: Allen :hug:

As I said before I understand your frustration, just remember the madder you get the worse it is for you. I know it is stressful but try and look at is as a mini vacation {dumb I know} but it works for me :)

I hope they call soon.

got here at around half past 3
had some issues with the ekg, actually still wearing the pads
didnt start ivig until almost half past 9
I cant see my keyboard, Im typing in the dark and Im not that good, so please understand no colons or semicolons, dont know where the key is.
about 45 minutes of infusion, not feeling anything, so I guess that is good.
pre medicated with tylenol and benadryl, but the hospital does not stock my other medications, so its a good thing I brought my own, the nurse got it approved.
other than that, its very loanly. I pursuaded my family not to bother coming up today other than my wife tkaing me here. I dont want to burden anyone.
joanmarie, vacation..........not for me, this is more like a prison sentence.
Im hoping this works, cause I know this will be torture for me for 5 days.
Ill report if anything gets icky.
other than that, it seems pretty easy so far.

Hey Allen,

I'm glad that the IViG isn't too bad...Make sure that they don't run the infusion too quickly...200 is too fast...I passed out from the benedryl a couple of times, and woke up to see that they were running it @ 300 at one point...I got the mother of all headaches after...

It is lonely...Do they have those little tvs with movies? The place I go to has those, and they definately help to pass the time...

Keep us posted on your progress!

Nicky

the rate states 40, orginally was aet 30
thankgod I can use my laptop, and say hi to all my friends.hour and half in, nothing, feeling good, sleeping pill starting to kick in, maybe Ill give sleep a shot.my son put 6 movies onto my laptop and gave me his sony soundproof headset, hes a good kid.I have some books with me when My eyes feel strong.

Allen, I'm glad you finally got in. I understand your trepidation. I've never had IVIG but it seems like sausages to me - I really wouldn't want to think too much about what's in it. :Noooo: And it's scary to have anything done or put into your body. And then there's the needles. Ugh.

But I have seen people rave about the results, so I'm crosssing my fingers and hoping that you get great results and no bad side effects.


Ally

there was no sleep last night, what was I thinking.
between the clanging in the halls, my roomies tv, the bright lights in the hallway, my machine beeping its alarm all night long(I guess thats why they infuse while youre awake, so the machines alarm doesnt wake you)
the few patients on the floors screaming for nurses, crying, whatever, I felt bad for them. but sleep was impossible. I guess 5 days of sleep deprivation will really see if my eyes are myasthenic or not.

Can you close your door overnight? That's what I did when I was in the hospital last month for 11 days. I also took some ear plugs with me (the kind you squeeze and when you put them in your ears they expand). This helped greatly in blocking out some, not all, of the noise. I got them at Wal-Mart.

Now that you're finally there, you can count down the days til you get to go home.

Hey Allen,

Glad you're finally there and so far so good. You may find yourself so tired from the stress and lack of sleep, that you'll actually be able to sleep through most of the noise and lights tonight. I hope it continues to go well and you get great results. Hope the foods decent. Keep us posted, we're all pulling for you.;)

Hugs,
Pat

the nursing staff here is fantastic. they are considerate, respond quickly, and answer any questions or get the answers quickly.
I dont really bother my nurses, other than ring them as they instructed me too if the iv machine starts to beep., seems the ivig soup has a tendency to have tiny bubbles, and the machine is so sensitive, it stops and its alarm goes off when it detects tiny air bubbles.
I tried to get the doctor to infuse my next dose early today, he said hed like to, but the staff wont infuse at least for 6-8 hours after finishing first dose, something like that, so I have to wait, she just informed me 4 pm today it starts.
I feel fine, a bit of stomach upset, not sure if its the ivig, and after bloodwork today, around 6am, I passed out for an hour or so, felt good to sleep.the last 5cc of solution woke me up beeping.
Im just documenting how I feel at the time while im here.

patient relations just came in to make sure everyone was treating me ok, they were impressed I knew all my nurses names on all shifts.
I feel when a nurse is shooting stuff into my viens, its good to know her name.
btw, they also stuck a heparin syringe into my belly this morning so no clots. not as bad as it sounds for any scardey cats. Just the tip under the skin, hardely felt it, sounds so much worse when she says i have to inject this heparin into your belly.
reporting live,hope youre all having a wonderful day.
I didnt eat much, my wife says the food was pretty good.
they off many alternatives to their menu, like cold sandwiches for lunch, mashed, baked instead of what they have on menu. and so on.

I think they gave me heparin in my IV -- or maybe that was with PEX -- can't remember -- I do remember it gave me a nasty taste in my mouth. Isn't somebody (a nurse) sitting with you during the infusion?

I was watched constantly -- with bp taken every 15 minutes. My machine had the bubble problem, too -- the nurse was on a rolling stool -- there were three of us -- she thumped our IVs quite a bit.

You NEED to eat so that you will DRINK. DRINKING is key to NOT getting the headache. If you don't like water, drink SOMETHING -- maybe weak tea!! You also need to keep your kidneys working!!!

Sorry, not trying to be bossy -- just want you to have the BEST chance at a GOOD outcome!!:)

Hey Allen,

You sound like you are in much better spirits today! Nice to hear you have great nurses too. Don't want to be pushy, but do try to eat. It will not only help you to keep up your strength, but will help prevent you from feeling nauseous. And, drink, drink, drink! You don't want to run the risk of getting one of those nasty headaches others have taked about. I had those shots too when I was in the hospital a few months back. They didn't hurt, but the huge purple bruises they caused took 6 weeks to fade. Hang in there, we're all pulling for you.;)

Hugs,
Pat

Ohhh I hate getting the heparin shots! I am so glad you got in and your attitude is sounding happier and happier :D Remember to drink a lot of water. I am enjoying your updates, please keep them coming!

Now try and get some sleep.

A lot means at least 1.5 liter per day...
Maurice.