Kylee91003

it was NORMAL!!!I think my heart was pounding and going SOOO fast prior to the needle EMG part. ... but thankfully it was normal! It took a while to hit me to realize ok.. I'm one year past my last emg and 18 months past symptom onset.. with a normal emg.... I can put some fears to rest.. who knows what I have.. that is still a mystery. .. who knows what course it will take.. but I am just so thankful it was negative! Thanks so much for asking! How are you doing

Thanks so much, I appreciate it.. I have basically itched for a year now (since my first ivig)... i have had periods where it seems to improve.. or when the batch doesn't irritate my skin.. and then the next round will really get to me - I have no idea why!! Thanks for the thoughts.. I'll let you know how it goes!! Ugh to be under a microscope for 90 minutes makes me nervous.. ick!

oh and plaquenil is a rheumatology drug- antimalarial actually.. it helps with energy and aches and pains with certain autoimmune issues.. they didnt' know what my specific issue was, just thought they would try it i guess! I am doing pretty well, just SUPER NERVOUS as I have a 90 minute EMG tomorrow.. my first one in a little over a year.. I'm not afraid of the pain etc.. just them telling me something bad!

yes my eye/brow, eyelid and face all get worse as the day goes on.. the speech is the same.. In the morning when I wake up I feel ALMOST normal.. but still not quite normal.. .. I have bad itching with my IVIG.. it usually starts about a week after the infusion or so.. I have eczema looking lesions on my legs, but have actually gotten small painful blisters all the way up to my scalp.. on the palms of my hands too... it is better with a slower rate.. but some infusion batches are worse than others - no rhyme or reason that I can find! I probably look like I have fleas, as I am clawing my legs fa lot of the times its very itchy..

My leg and arm is good. But my face not so much. I think I am having an allergic reaction to the ivig. Started off with real bad itching 3days after and real dry skin and burning. I talked to a nurse today and she said yes it sound like it. Also my skin gets real tight. Do you get dry itchy burning kin from ivig? How r you feeling?

Yup... i sure do have a lot of trouble keeping my mouth shut when I'm weak.. it's strange, when I was admitted into the hospital, i couldn't keep my mouth closed at all- and was drooling on myself.. They give me benadryl and tylenol before my infusions - it knocks me out.. but I do have allergic/adverse reactions to it - i get itching and skin eczema like lesions.. i get chest pain if it goes too fast.. and aseptic meningitis a few times from it.... Skipping my ivig last month, i could barely smile - i had this snarl like smile.. closing my mouth, swallowing etc was difficult. my eyelids can droop so badly, well eyebrows really, that it hurts and strains my eyes.. my eyes are also sore when I move them as the day goes on.. they are strained.. how are you feeling

Hi I am very tired latly and my face is burning all the time. What is plaque nil? Did they say what your auto immune disease was?

thats a great idea to follow up with a rheumy... I have one I see at the university clinic... as everyone says it is something autoimmune (but who knows what).. They initally thought maybe it was neurologic sjogrens.. though that looks less likely now, my ANA was as high as 1:640 or 840 can't remember, but at other times can be as low as 1:80.. however, that still doesnt' mean anything - negative or positive.. They have a lot more tests they can run.. and lots of good treatments.. I take plaquenil, which has been a life saver- helps my energy and my joint pains especially! Takes a while to work, but once it did, It ws really a lot better.. Good luck with the insurance and the IVIG etc... Are you still feeling any better?? Thinking about you!

Kylee,

I know its scary, but don't think in terms that you will be "leaving" your sweet children. It sounds like, by him saying it is a problem with your nerves and not your brain, that this means strictly a peripheral neuropathy. i.e. not involving the central nervous system which is IMPORTANT because this means whatever is wrong is potentially reversible, since, unlike the CNS, the peripheral nervous system CAN regenerate.

Hang in there.

If you don't get answers, consider asking to be referred to Johns Hopkins. The longer you are stuck in limbo without effective treatment, the more that may not be able to be undone. I don't live near enough to Hopkins to where it would benefit you to stay with me, but, I can and will come out and be with you for your appointment if you need somebody.

how are you doing? Thinking about you and your familiy

. Even saying my name- my lips wouldnt' move right to form the words and now I can do all of those things almost normal.. at times I have exacerbations, but usually I am much much better. though I never feel "normal" like I used to.. My muscles all vibrate with weakness, which drives me crazy, along with the numbness/tingling so I take lyrica which helps... I know what you mean about your little ones... I kept saying If it was just me, it would be different, ,but factoring in little ones that depend on you, and that you want to be there for and do so much for makes the panic SOO much more for me.. Though it's not ideal.. i can deal with me being sick, but how it affects them is what makes me completely panic.. they are so young.... but you never know.. so I just try to make each moment the best it can be...regardless of whats going on

what type of dr did you meet with this past time - you said you would be meeting with the ALS dr next time, are they from the same clinic? My dr is an ALS dr, but does everything neuromuscular, though it is at the actual ALS clinic... OH YES - I drool! I drooled so badly in the months before I was admitted into the hospital, that I had a chapped face! the corners of my mouth were red and peeling and chapped and some of my face too.. I drooled until after about the 3rd round of IVIG or so.. and this past month when I went 4 weeks without IVIG, started drooling as well.. I couldn't even seal my lips, puff out my cheeks - I spilled so many drinks on myself, toothpaste, you name it -since my lips didn't move well.

mine it neuromuscular.. now weather that was caused by a rheumatological problem initially is what they think may have been the cause (autoimmune).. they all, including me, thought it was MS at first - and I hoped it was!! (who knew I would be hoping for something like that)! I would defintely ask them WHY they are waiting so long for the next IVIG... when I got mine, it started to wear off after about 10-14 days, so even waiting that 3 weeks was too long.. usually they do 2-3 weeks afterwards.. but everyone is different... So, if they said it was coming from your nerves - did something show up abnormal on your nerve biopsy, or your NCV?? Did they do a muscle biopsy too? Did they find clinical weakness on your exam, or anything else abnormal?

I'm 28 & female

I hope everything goes ok with you, in young and have kids too & am scared too! I pray always & will for you too! May I ask your age?