Seattle you don't sit there with a needle in you for hours. The needle is only used for the first 5 seconds or so. The way it works is the needle just like in drawing blood, is used to poke into the vein. Once the vein has been accessed the needle is quickly removed and a thin very soft and flexible silicone tube is left in the vein to act as a very miniature tube to carry the medicine into your vein. They tape that down quite well as they don't want it slipping out as it easy to remove.

You can move the arm around fine, the movements will not cause any harm to your vein as the tube is so soft and flexible.

Joe

Hi Maureen,
I am going to speak strongly to you...It is very important to have IVIG before thymectomy when you have MG symptoms. You really need the IVIG to get you strong enough for the thymectomy... to carry you through the surgery and the healing time. Any surgery puts stress on our bodies which can cause an exacerbation of MG. Most receive the 4-5 day loading dose before the surgery so your body will be strong enough to heal from the surgery without going into crisis. It literally can be a life saver and will help keep you from intubation after surgery.

Many with thymoma will see their MG symptoms abate. The way it was explained to me is that Doctors still aren't sure which comes first, the thymoma or the MG in thymoma/MG patients. For some with thymoma, their MG symptoms only flare when thymoma is present. So with those patients, they call the MG a neoplastic disease of the thymoma which can also mean their MG can abate with removal of thymoma. For those whose MG symptoms do not abate, their MG can be more refractory...harder to treat (myself being in this group)

I also want to stress the importance of removing the thymoma as soon as possible. Thymoma is usually slow growing but there are types that grow faster than others.

So my MG/thymoma friend, please comply with your Doctor and get the show on the road:-)

Praying for an uncomplicated thymectomy (most are), a speedy recovery and that your MG symptoms are abated.

Hugs,
sherry

Hi Maureen, I have read your message as well as all the posted replies. As you can see, it can go all over the map. The process seems to be different for everyone. For me personally, IVIg keeps me moving every day. My MG started with double vision in January of this year and within two and a half months progressed to the point that I would just fall down as my legs would no longer hold me up. (very embarrassing in meetings) The scheduled surgery for my Thymectomy was cancelled twice because I was just too weak. I did five days of Plasmaphresis to help build up my strength enough to have the surgery (One week ago today). I do IVIg every three weeks. For me it takes about 6 to 7 hours and like Joe, i take lots of things with me, like my iPad. I started IVIg in early April and have not had a fall since then. The only other drug I take at this point is mestonin. My Quality of Life is about 25% of what it was prior to the onset of MG, but I get up every day and move forward telling myself that i will get there. Like you I had a crazy busy job, senior executive level, doing about 35 business trips a year. I love my job and i hope to eventually get back to it. But right now my commitment to an increased quality of life for me and ultimately my spouse is far more important. Take the time, do the treatment, drink lots and see where it takes you. I wish you all the luck in the world.
Richard

thank you for telling me that, Joe--that makes it seem a little less scary. More than anything, I'm anxious about the anxiety itself, if that makes any sense. I'm afraid I'll panic in the moment and make things harder for myself and everybody else involved! Somehow, it's scarier than the actual surgery to me.

I had maintenance IVIG for a year before having to move to plasmapheresis. Once I learned to hydrate well a week before, during and a week after, I did not have any reaction. I too was premedicated with Benadryl or zertec , Tylenol and fluids before each infusion. I also would take benedryl/Zyrtec and Tylenol for a day or two afterwards to ward off headache. Luckily for me, that regimen kept the headaches away. Yes, was tired afterwards but like Joe stated, felt strength about a week later.
The needle they used for me was a small gage needle so it wasn't too bothersome. I also had them place it on my forearm, not in the bend of my arm so I could use that arm during treatment. I always slept, drank water and ate plenty of protein during treatment. Called it a "spa" day...a day to do nothing but sit and rest and rest can be "good medicine" for us:-))
-sherry

After reading all of theses posts , it certainly doesn't surprise me that all of us " snowflakes " aka us" mgers " have many different reactions to meds , treatments and how much we can all tolerate.

Belive it or not , your in a good spot and what i mean is you have a dx , a treatment plan and like many of us your stuck on going forward making and taking the next step. Being proactive like you are , and asking , talking is one of the reasons we are all here.

Remember M , An object in motion well, stays in motion . Having said that I think that when your ivig , thymectomy i know your going to say thank goodness this is behind me cause I'm feeling like " me ".. I know of this cause it all happened to me and it will to you as well.

Stay in touch, never , ever give up..Cj

Thanks everyone, your most recent replies help me so much! I know i just need to adjust to the idea in a BIG way. No, I can't "travel" for work that week, but I can do laptop work and plan on being very caught up by the end of the week, that could be a new feeling for me. And after being on the road pretty non- stop for a few weeks, that could be a good thing. I am still waiting results of a biopsy before I can schedule surgery but the IVIG will allow them to bring down my prednisone faster vs slower so thats a good thing towards getting to surgery.. all part of a master plan and in the meantime, it sounds like it might make me feel better.. a win all around! I am waiting on the insurance company, who has not confirmed yet, but I expect to hear and be able to do it around 6/1.. 5 days.. 4 hours a day.. hopefully from home.. we shall see.. thanks everyone!!

Now thats the response we are all looking forward to hearing you say , good for you thats one of the reasons why we are all here.

Hey hun,

My name is Aj i am 24 and i just joined this forum. had this for about 6 yrs, i'm actually in the hospital now doing ivig for the first time and i totally understand, i have a HUGE needle phobia. i have veins the size of threads so they missed my viens all the time. but sometimes we just have to "buck up" and stay strong. good new is that i have found more pleasant ways of doing it. i chose a hospital that i am comfortable with because i trust the iv therapist here and they really take care of me explained every questions i have as i am worried especially this is my first time.

This is what i did to make it as pleasant as possible:

1.Take something to chill u out. i take a zanax right before and to numb everything
2. get Novocain on your arm; like a ton all over where the vein maybe good and hot pack so the vein is nice and visible. i always use basically the same spot so that i dont have to go through the nerve wrecking time finding a new vein
3. tell them your are scared and you need some who's a pro nurse in inserting the needle, if your in the area of northern westchester hospital has a lady named Fran who never misses and i barely feel anything.
4. worst case, get a PICC line put in but make sure you request to be put under anesthesia.

and BAM! your done :)

The treatment isn't so bad. i have really crapy small veins so even saline burn but its far from painful. how effective this ivig is well we have to wait and see... but i just had plasmapheresis 3weeks ago and it wasn't effective at all. i was really sick couldn't walk, trouble swallowing, couldn't tie my hair up etc. you know all the super awful stuff mg comes with. i can't walk up and down stairs so hopefully this ivig treatment will improve my condition so i dont need assistance and move about on my own. I also just found an AMAZING thorasic surgeon from mount sinai hospital! who is gonna do the surgery telescopically on my side so i don't carry a scar! really hoping it works because i have maxed out on my mestinon at 120 mg every 6 hours (which is the max; if you take more it may worsen your condition) and cellcept 500mg 2x a day. So we are actually in the same mg boat, also my surgeon said he wants me to do plasmapheresis again for 5days right before the surgery. Last time i did it voluntarily they also were able to put me to sleep while doing it. i really hope all this helps you stay positive for now! have some of the best doctors in the world and they will cure me!

Thanks for the input.. they come on Monday ..

Just want to wish you well and send you my support. It is hard to accept that we require treatments and drugs... And it can be very frightening and distressing, as it sometimes feels like we are our own guinea pigs. I know also how hard it is to muster optimism when all you really want to do is curl up and howl. I am currently reading all about the brain, how it can rewire itself and how our thought processes alone can trigger so much action and inaction. Surviving our MG journey takes a lot of physical strength but even more mental strength as we often have to fight our own flagging spirit.

I have been doing a little self hypnosis where I visualise myself smiling. It might take a minute or two as I fight the stresses but eventually I can finally get an imagine and then I hang on to it by building a story around it. While that is happening my brain is releasing all those feel chemicals. For me, I need those chemicals to get me through... Wishing you love and light