Thank u so much Annie! Great idea about the pic!!y phone is Dying but I snapped a pic and my eyelid is quite droopy (it's more my upper eyelid/below my eyebrow that suddenly says over the eyelashes is that a normal mg droop? ) oh thank u. Yea they know about my mthfr and don't think it to be a huge concern. I asked for my aspirin to take beforehand to be safe I'll make sure my

Thank yall so very much for all of yalls messages, i REALLYappreciate it!! Sorry, my phone died when I was replying and I just now got my laptop and phone charger!
Sooo.. I recieved IVIG last night, loading dose.. felt kind of bad this morning, but I think it was the benadryl hangover, I just felt SOO doopy! Do yall do benadryl with your IVIG? If it is MG, does benadryl exacerbate your symptoms?

It was strange, the nurse also noticed my "saggy" face and especially right eye.. I took a picture and it is better today, though I have been taking it easier today than i have in a long time!

For those of you that have had IVIG,... how long does it take for it to work if it is MG? They ran a TON of bloodwork on me, including Musk.. but it will take a while to get it back.. My breathing seems better today, but I do notice difficulty when I exert myself but nothing like yesterday where it was hard to talk without taking breaks

If this is MG, does IVIG do the tick usually, or do people usually need steroids, mestion etc .. I will be here in the hospital for a few more days getting more IVIG, another Lumbar puncture, etc.. If it works, will I just go home and it all go back to feeling awful if I dont go home with meds? I have been impressed with everything here, they seem to be on top of it and ordering a lot of tests since i'm not a straighforward case by anymeans..

Two more questions, (sorry, i have soo many)!!

1. For the eyelid droop- my actual eyelid does seem droopy, but the top part of the eyelid below the eybrow is what is really noticable.. I have never had "hooded" eyes, but it droops down to my eyelashes-usually i have a fairly big gap there- is that typical of MG?

2. When my muscles fatigue, I feel like they are almost vibrating afterwards. just really shakey- especially my face.. it almost feels numb, its hard to explain. My face and shoulders (from my arms being "too heavy" ) seem to be the worst with that.. anyone else??

Thanks again so much.. I am not a fan of this diagnostic limbo, just praying that this IVIG does the trick!

In my case it usually takes 2 series (5 TREATMENTS) of IVIG for me to see improvement. I think I'm at about 14 months of being dx'ed. I get IVIG about every 2 months. I am currently on Cellcept, Mestinon and Steroids. I had a year treatment with Imuran but it just made me real sick. Mestinon is good for 3-4 hours but it does help my droopy eye. Keep in mind that what works for one person may not work for another. My sister has the "saggy face" but so far is stubborn and won't seek treatment. Oh my IVIG comes without meds and only had a couple of minor headaches. A treatment takes about 2 hours and 15 minutes, so they give me a pretty fast rate.

Hang in there with your Neuro I'm sure he figure out what works for you. Hope you feel better soon.
Mike

Thanks Mike!!! I appreciate it!
They started my second treatment last night and increased the rate quite a bit..then a few hours later BAM woke up with a HORRID headache! Still have it pretty bad, but have been getting toradol and some other meds for it... but I am excited I think I might see improvement!!
My eyelid is back to normal- no more "saggy" face! Even the nurses have noticed this.. I have more strength and my fingertips seem less floppy...If it wasn't for the headache I think I'd feel pretty good! They are going to give me the third round tonight at a much slower rate.. Have to have another Lumbar puncture, brain MRI tomorrow, so We'll see! I just hope that I really am getting better!! I have felt bad for so many months it seems surreal to think I may actually feel better someday!

Drink plenty of water and I mean PLENTY!!!! That may help. Hang in there!!
Mike

Thanks... Now that the headache is a bit improved I can finally sit up and drink water again - i was having a hard time sitting up or moving before it was so bad.. Now I do have quite bad body aches and chills along with the headache and just spine pain.. About to start round 3 here in an hour... did yall notice instant improvement or did you notice some delayed improvement as well, days later did you seem to continue improving at all??

After 10 infusions I noticed improvement a couple days later. On the day of the infusion I feel pretty tired and sometimes a slight headache. But again plenty of WATER not coffee or soft drinks will help. I have noticed different people get different reactions. I talked to one fellow in NC that had complete remission after 5 infusions. To be so lucky.
Mike

Whoa, hold the needle! They are going to upset the fluid balance in your body for a few days and then do a lumbar puncture right afterwards?! Is this an "urgent" procedure to have done? If not, you might want to consider waiting. Please have a conversation with a doctor about this. With your clot risk, the risk for infection while being in a hospital, meningitis, etc., you really need to talk it through. Unless you are confident all will be okay.

They don't "have to" do the IVIG infusion "faster" as it sounds like they did the 2nd time. You can ask to have it done more slowly. That may reduce the side effects, like the headache. Good grief, faster is not always better.

What you describe, as the area just underneath your eyebrow (if I'm getting that right) coming down onto your eyelashes area is exactly an MG droop. There are different variations, of course, including one or both sides, the muscle below the eye, an eyebrow drooping and your entire face. I simply love when my nose droops.

That vibrating/shaky thing may be due to muscle weakness. Has anyone checked your blood sugar when you are like that? Are you on any other drugs that have that as a side effect. You can't always assume everything is caused by one disease. When muscles get weak, circulation can decrease. That can make your muscles feel weak when it is probably the nerves. I have to wonder if you have a B12 deficiency. Please have that rechecked. And sublingual B12 is far better. It bypasses the GI tract and goes to work in the bloodstream right away, not unlike nitroglycerin. I like the Jarrow Formulas brand, though the Source Naturals brand is good too. I get mine at www.iherb.com due to their service and savings.

I should say that I've not had IVIG, can't have it. But from what I know from others here and friends who have had it, the onset time can vary as can how long it lasts. I hate to douse your enthusiasm but you have MG (probably). If you do, unless you go into remission at some point, you will always have the effects of it. You'll never be "normal" again. So don't think because you had IVIG that you are now superwoman! You do not want to get to this crisis point again.

I hope things continue to go well.

Annie

Thanks Mike- I am downing more and more water right now.. they just started IVIG #3 and said they won't run it over 50

I told them last night, and agian tonight, If I'm goign to be here in the hospital either way, I could care less if it takes a while or not! I'm here regardless... but if it's going to "fix" me faster I can deal (which I don't think faster rate = fixed faster from what i've read)

Annie- thank you so much! I will deifntely talk about the LP again tomorrow with them. I had my first one only 3 or 4 weeks ago.. but they wanted it repeated since my symptoms worsened so fast this past week.. They are confused by the sensory issues associated with this all. but I also told them, maybe I have small fiber neuropathy secondary to just being pregnant a lot and nursing for a while along with the GI issue, and the weakness is separate, so they are leaving a lot of possibilies on the table I guess.
I have wondered as well about the b12- it makes sense with me being post partum and having a malabsorption issuse (possibly celiac) right before onset of all of this- but my b12 levels have been good, so they added a methylmelonic (sp?) acid level, which they say will give a more accurate reading of the b12 levels. but I may just go ahead and get one of those sublinguals, since from what I am aware of it can't hurt! thanks for the link!
I wondered if the vibration/shakey feeling is just muscle weakness/muscles pushed past their point.. Interesting about the eyebrow too! I wasn't sure if that was what an eyelid with MG does or not-- the nursing staff here all noticed my right eyelid when I got here initially and then at the end of the day yesterday dropping.. I did take a pic, and I can notice a difference- my whole face does seem to droop! I thought a few months ago to myself, man being pregnant really made me age- though kind of took away/botoxed effect my forehead some.. strange!
It is amazing how much better I do feel so far though- I feel like my strength tests were much better this morning (though I coudln't see straight with the IVIG headache)

One odd thing (a good thing I think) is when I woke up with the headache this morning I went to swallow the tylenol they gave me and i tilted my head back and swallowed big gulps of water.. I realized suddenly that huh, swallowing seems "normal" all of the sudden! I hadn't really realized how abnormal swallowing had gotten.. is that also typical of MG? I had to go get an MRI of my neck yesterday (found it odd to swallow in that position) and today one of my head (they thought they found something on the neck, but didn't ), and swallowing was now no problem in that position!!! I am getting SOOO excited that I might respond!
As much as it will be a lifestyle change having MG, or anything else that responds to IVIG.. I can deal with that and will be thankful every single minute of everyday for it.. After being told ALS was a possibility in the beginning of this all ..MG is manageable, even if it is a hard road, i"M just thankful It's a road that i'lll be able to be on for years to come, and see my kids grow!
Thank yall again so much for yalls time!!! I really appreciate it, and i'm sure i'll have many more questions!! sorry!!! This is all new territory!

MG can affect any of your 640 skeletal muscles, including the ones you need to swallow! So, yeah, it affects everything you do.

The sensory issue might be something else or it could be MG. The neuro who diagnosed me said he hears that a lot from MGers who aren't diagnosed yet and even some who are. When muscles get heavy and weak, they can feel like how they do if you get the circulation cut off in your arm. Not that extreme but similar.

Have you been tested for a Vitamin D deficiency? That can affect the muscles too. Did anyone do the celiac antibody tests?!!! If you have CD and keep eating gluten, you are damaging the villi in your small intestine (and possibly damaging your brain as recent studies suggest), so get tested! I have CD and it is entirely doable to live without gluten.

People with autoimmune problems can often have more than one disease. Some people I know have those odd mutations, clotting disorders like antiphospholipid antibody syndrome, etc. too. So your doctors should not dismiss MG simply because you have other symptoms. I hate when they do that. They like things to fit neatly into the "standard" diagnostic guidelines.

Keep getting better. Get enough sleep too.

Annie