I pushed myself a little both days when I got my ivig. I went out at night, the first night with the needle still in my arm, wrapped in coban so nobody knew, it looks like an ace bandage. the second night my son moved and around 8 pm, my world fell apart as in I was about to tip over.
made it home, rested up and starting to feel super again.
I havent taken mestinon in so long I dont remember the last dose.(around a month ago?)
I just have to say it again, this stuff is amazing, and I get zero side effects from it.

Hi Allen,

I'm not really overweight, so I can't really say about that part...

But I've noticed that when I exercise, it's hard at first, and gets easier as I go along, or somewhere in the middle of the workout...I've read other people's account who have MG and who exercise, and it's similar. One guy had some limb weakness (pretty sure), and it was the same thing...It was difficult at first, and got easier in the middle of it...

When I exercise and experience this, I almost imagine that the blood is pumping so quickly that it sorta causes the antibodies to dilute and spread out? I feel this way because sometimes during exercise (especially in the past) my tongue was so weak, I could barely more it, and by the middle of exercise, it was moving again....

You have to be really careful, but it's doable...I think it's the same for a regular person who doesn't have MG- you just have to really listen to your body more because it could be dangerous not to...But I guess it's like that for everyone...

About the IViG....Have you found that you're sorta bloated? I have had it a couple of times, and I noticed a major bloat after both times doing it...If you've noticed any recent weight gain, it might be from the treatment (but I think it should pass)....

I really think it's so great how this treatment works for some people...I can hear your happiness in getting better and I'm so happy for you!

Wish you continued good luck!

its tough to tell, cause I was fat before I got ivig, now Im just bothered by it, it seems I just got bigger the past 6 months. If I try to blame it on the ivig my wife will scream at me and tell me its not ivig, its doritos.Its tough being married for 32 years to a woman that is the same 120 lbs when she was a teenager.

Allen,

I am so happy to hear how great the IVIG works for you.

LOL @ the doritos comment- So yummy, but with consequences! lol...My personal favourite is just plain flavoured chips with homemade dip- cilantro, fresh chives, green onion, sauteed regular onions that have cooled....Throw 'em all in a food processor with plain cream cheese and sour cream....P.S. I'm hungry now! lol

Something that's really good that you can do at home is to get the rubber bands...I think you can get them from a physio therapist...You attach them to an object secured firmly to the ground or wall, and you pull on them with either your arms or legs (whatever you want to work out)...Also, jumping jacks are really, really helpful....You can do them anywhere, and slowly increase the quantity...If you have joint problems, they can be a bit tough because they're sorta high impact, but otherwise, they work really well...

I started getting my strength back in full force the last couple of days.
I was using a sledge hammer today to take out a row of cabinets that wouldnt pry off a wall.
A little washed out after ripping out shelving and cabinets but a quick rest and I felt ok.
Im having other issues now I must discuss with my neuro next week.
Important issues and I hope someone here can offer me something on this.
Being overweight, and standing on my feet all the time, my job, and at home I woodwork so Im on my feet forever, Ive developed dark patches of skin around my ankles and my regular doc told me a year ago IM developing varicose veins due to my standing and weight.
Since my last two IVIG treatments, seems they got alot worse, bothering me.
I notice the site of my arm where the IV was in last week, its very hard and I can feel the veins like they are almost popping out of my arm. Very strange.
I know losing weight would be the key to most of my issues, but I need a realistic fix, because Ive struggled with weight for 25 years.
I always had extra pounds, but kept it in check with doubles tennis.
A melanoma and loss of part of my nose made breathing difficult for me when running and moving, so tennis faded away, and more weight came, then followed MG. Not a good combo. Im arthritic, pop a few motrins now and then, but overall I feel good. The itch burning legs and ankles are an issue now, I wonder if Ivig aggrevated the condition.

Allen, Please tell your doc about the vein issues.

Can you describe the "itch burning" in your lower legs and ankles? Does it feel like you have numbness or tingling? If you do, please get your vitamin B12 checked!

I'm sorry about the melanoma but glad you are overall doing okay.

Annie

Allen,
Have you and your doc talked about compression support sox? They have made a world of difference for me - - actually makes my legs feel stronger - and less tired/achy.

If you try this, get your doc to write perscription so you can turn it into insurance for reimbursement.

Sue

I see my GP and the neuro in a week and a half, same day, so I will discuss it with both of them.
Im quite sure my GP will yell at me to lose weight like he always does.
My neuro is a bit more sensitive but will shrug his shoulders and say, yep, your gp is right, you need to drop the weight.

seems losing weight isnt as easy as it was 15 years ago. or even 5 years ago.

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