[erinhermes]

Hello all! Just wondering if ANYONE has a clue as to why IV IG is so great for some versus the exchange?

I feel (and look) really healthy after my IV IG where as after the exchange I just feel tired. My neuro always teases me and tells me I'm "addicted" to my IV IG - all I know is that I love the stuff! LOL!

The only thing I DO know is that IV IG is pooled plasma versus actually having the antibodies removed from the body.......

Any ideas? Also - which works best for you?

Also, I recently had a port put in my chest - a big one (think 3rd boob) and was wondering if they access that for the IV IG or the plasma exchange?

Last question; how many of you have fibro and MG? I may be jumping the gun on this but I am truly wondering if I have it! Is fibro autoimmune as well?
This pain has gotten out of control. I have to get up on the days when I feel well, but after only a few miinutes my left side buttock hurts and I have a shooting pain down my leg that numbs my foot - now it has spread to my right - all the way to my ribs. I have tried stretching, massage, tylenol, pain pills, heat, ice, vitamins, you name it, to no avail.

I checked it out the other night and it seems like I have all of the pressure points, but what are the odds? Seriously?

Any advice would be appreeciated!

Erin

[AnnieB3]

Erin, I'm sorry you are having pain. I will again say that physical therapy, done not at home but by professionals, is something you should try. They should be recommended by your neuro because all physical therapists don't know about MG/neuromuscular diseases.

No, fibro has not been proven to be autoimmune. They do not know what causes it though there are lots of guesses out there. Leave the diagnosing up to the doctors. Having said that, there aren't a lot of fibro experts. Some rheumatologists are.

You have a lot going on and are on a lot of drugs. I may be smarter than a gnat but I am not smarter than doctors. I simply can't advise you on anything. A doctor needs to take it all into consideration and figure it out.

I will again ask, how much vitamin D are you taking? A deficiency in that will cause widespread musculoskeletal pain. Pred might keep you from absorbing nutrients.

I've never had plasma or IVIG, so I can't help you there.

I don't know what else to tell you. Maybe a primary doctor can help you ferret all this out.

Annie

[allen L]

erin, I dont know much about anything, but from past experiences Ive had.
Both in 94 and 96 I had disk surgeries.
The pain in my buttocks, almost like someone is shoving a screwdriver into it, and then radiated down my legs, and numbness in the toes, foot, leg.
Everyone is different, but often relief from disk pain is not easily obtained.
Your description sounded so similar, but so many disk bulging patients have the same exact pain in buttocks and radiating down. When you said numbness , wow, it sounds so familiar to me.
I opted for surgery both times only because I was working fulltime 6 days a week, and didnt have time to try to work anything out. Ive been basically back pain free ever since, besides the usual overdoing it and pain stuff.
Please contact your physician, a little therapy and you may be feeling better in a week.

[erinhermes]

Hey Annie! THanks for the advise!

I am on 1800 mgs of Calcium w/1200 IU of Vitamin D - or 300% of the daily rec amount right now. My hemo/onc started me on these as soon as I started on the Pred. I am also on prenatal vitamins - my internist felt they were needed b/c as you said, pred can rob the body of stuff.

I start PT on Wed and cannot wait! My docs know something is wrong but they just can't pinpoint it yet! It is so frustrating hurting like this!
I had a GREAT time in NY but was wheel chair bound - not due to weakness but to PAIN!

Again, thanks!

Big hugs!
Erin

Originally Posted by AnnieB3

Erin, I'm sorry you are having pain. I will again say that physical therapy, done not at home but by professionals, is something you should try. They should be recommended by your neuro because all physical therapists don't know about MG/neuromuscular diseases.

No, fibro has not been proven to be autoimmune. They do not know what causes it though there are lots of guesses out there. Leave the diagnosing up to the doctors. Having said that, there aren't a lot of fibro experts. Some rheumatologists are.

You have a lot going on and are on a lot of drugs. I may be smarter than a gnat but I am not smarter than doctors. I simply can't advise you on anything. A doctor needs to take it all into consideration and figure it out.

I will again ask, how much vitamin D are you taking? A deficiency in that will cause widespread musculoskeletal pain. Pred might keep you from absorbing nutrients.

I've never had plasma or IVIG, so I can't help you there.

I don't know what else to tell you. Maybe a primary doctor can help you ferret all this out.

Annie

[erinhermes]

Hi Allen! I am desperate @ this point to get some relief! It would be wonderful to SLEEP through the night without it feeling like I'm being stung by hundreds of bees!

Some of my docs are just convinced that it is a compression fracture - with good reason since I've been on so much pred, but I've had xray after xray with no fractures yet! Thank God!

All I DO know is that I have been pain free only once in over a year - and that was when I was given a lot of pain meds in the hospital (morphine and norco) and that (for me) is not an option. I have to be lucid in order to take care of my family.....so upsetting! It was 4 hours of BLISS!)

OK - enough whining - how are YOU? Are you feeling better?

Big hugs!
Erin

Originally Posted by allen L

erin, I dont know much about anything, but from past experiences Ive had.
Both in 94 and 96 I had disk surgeries.
The pain in my buttocks, almost like someone is shoving a screwdriver into it, and then radiated down my legs, and numbness in the toes, foot, leg.
Everyone is different, but often relief from disk pain is not easily obtained.
Your description sounded so similar, but so many disk bulging patients have the same exact pain in buttocks and radiating down. When you said numbness , wow, it sounds so familiar to me.
I opted for surgery both times only because I was working fulltime 6 days a week, and didnt have time to try to work anything out. Ive been basically back pain free ever since, besides the usual overdoing it and pain stuff.
Please contact your physician, a little therapy and you may be feeling better in a week.

[Joanmarie63]

LOL, I am not a brainiac but I can say 18 years ago Plasma exchange helped me but I am a little confused as the having to go in through the neck, I had mine done through the arm, in fact I used to joke about it because they took the blood from one arm and was replacing it into the other and they charged me 300 to take it out and 300 to replace it, I hate see to what it would cost today

[Nicknerd]

Hey Erin,

I'm no brainiac either, but I often wonder about this too- why IViG works well for some, and plasma works well for others...I guess that's why my neurologist wanted me to be part of that study which measures exactly that...I had to pull out of it due to my job (which I ended up quitting anyway due to the MG)...

I know that plasma exchange definately works better for me, but I also feel drained afterwards...I look pasty for at least a week after having it done...The IViG just makes me feel weird...I literally feel like I'm full of fluid (prolly 'cause I am)...I think that I have a lot of trepidation about it too because I always have the prospect of Mad cows disease sitting in the back of my mind, even though the chances of getting it are very low...

Maybe it has to do with what antibodies are at work...I'm convinced that there are more involved than just anti-achr and anti-musk, which I think the doctors know too (seronegative MGers)...Also, a lot of MGers are prone to infections, and you gotta wonder about that...Maybe those people have MG because of molecular mimickry...I figure, if you've got an infection, those autoantibodies are going to be switched on again, because they're already 'programmed' to fight your parts, and are circulating around...If you get rid of the infection, maybe they'll be turned off...Maybe you're immunoglobulin deficient, and you're getting back what you need, fighting the infection, and thus turning off your autoantibodies too...I saw a program about a boy who had common immune deficiency disorder, and his family would notice how healthy he looked after having IViG....He also would feel fantastic after having it done...

As for the Fibro...I'm sorry that you're going through this too now...One thing that seems to be a common theme with people who have this is vitamin D deficiency, like what Annie said...I'm actually a part of another support group for this as my doc. thought that I might have had this at one point...All of the threads are, "Are you vitamin D deficient? I am!" something along those lines...There also seems to be problem with the adrenal glands and pituitary gland with people who have this...So the prednisone, at least for you, might be a big culprit...I've been having a lot of crackling, back pain, brain fog lately too...I hope that my doc. decides to lower my prednisone big time...Otherwise, there should be a new medical specialty; prednisologist

Nicky

[rezmommy]

I am definitely not a brainiac and I have only had the IVIG but it worked well for me. I just had to comment on the "third boob" ha ha ha ha ha ha ha ha ha ha. Thanks for the good laugh Erin! I am sorry that you are in so much pain. I pray that you get some relief soon. ~Mel