[cricket001]

Okay...finally coming to terms with this disease! I can't run from it anymore...I have pushed myself and pushed myself....thinking this would just go away...but it has caught up with me...regardless if I ignore it...

My doc has been so patient with me and is soooo wonderful! He has run every test to double check that it is not something else..like lyme disease etc...because my antibodies test.. and EMG on arms and face test were fine...and thalmus not enlarged...but did have an abnormal EMG test on legs...I apparently have neuropathy on my calves and feet...numbness is causing me to fall and have "drunken walk"...I guess??? Double vision is present...and droopy left eye...difficulty swallowing too...

I was admitted friday for my first IVIG infusion--doctor is keeping me in hospital for a 3 day infusion (4 hour infusion each day)...

Also started me on Imuron (sp?)....the side effects scare me....does this work? doc said it would take a month...but drug sheet said my hair would fall out and I would have a weaken immune system...and could be at risk for some cancers...

I have been taking mestinon 90 mg 3x day and 180 timespan....

I am scared to death...It took 4 tries to get my iv..it blew right after the infusion was completed...so they waited until today's infusion to restart....after 2 more attempts--they got it and my 2nd dose of IVIG is infusing now...

The IVs hurt sooooo bad......how do you all handle this? the doc said that after this...I would need IVIG about every 3-4 weeks outpatient!!!


Sorry for the LOONG post....but I am so worried! He told me to go two doors down and see the patient...because she has severe MG...I am scared to see her!

[Brennan068]

It is a scary thing to face and deal with for sure. Your doctor has given you good advice, go see that other patient with MG, she may be able to give you some insight into how she has dealt with the disease. You may just make a new friend

You'll come to adjust to the discomfort of IV's if you don't do what you're told I found the best way to deal with them was to focus on relaxation - I did some taichi a few years ago and can force myself to relax... anything you can do to not tense up will make any needles easier to bear.

Best of luck

[cricket001]

I think as soon as my infusion is complete..I will go and see her...

By talking to her....I will face my fears head on!

Stephanie

[erinhermes]

Sorry to hear you are going through this.......MG just stinks - plain and simple!

You MAY want to ask for a PICC line - that way they only have to stick you once........it is a bit more invasive, but when I had my 1st round of IV IG it was a life saver!

How much IV IG are you getting? How often?

I am also on Imuran and it seems to be doing the trick, cuz' my pred is going to be lowered to 30 mgds this week - AMEN!

Hang in there hon! It does GET BETTER! Truly! You should feel AMAZING after your IV IG for at least 4 weeks! Imagine!?!

Big hugs!
Erin

PS As I said, I'm on Imuran and I still have a FULL head of hair - and there are always going to be side effects for EVERY drug out there - every drug!
Try not to worry too much!

Originally Posted by cricket001

Okay...finally coming to terms with this disease! I can't run from it anymore...I have pushed myself and pushed myself....thinking this would just go away...but it has caught up with me...regardless if I ignore it...

My doc has been so patient with me and is soooo wonderful! He has run every test to double check that it is not something else..like lyme disease etc...because my antibodies test.. and EMG on arms and face test were fine...and thalmus not enlarged...but did have an abnormal EMG test on legs...I apparently have neuropathy on my calves and feet...numbness is causing me to fall and have "drunken walk"...I guess??? Double vision is present...and droopy left eye...difficulty swallowing too...

I was admitted friday for my first IVIG infusion--doctor is keeping me in hospital for a 3 day infusion (4 hour infusion each day)...

Also started me on Imuron (sp?)....the side effects scare me....does this work? doc said it would take a month...but drug sheet said my hair would fall out and I would have a weaken immune system...and could be at risk for some cancers...

I have been taking mestinon 90 mg 3x day and 180 timespan....

I am scared to death...It took 4 tries to get my iv..it blew right after the infusion was completed...so they waited until today's infusion to restart....after 2 more attempts--they got it and my 2nd dose of IVIG is infusing now...

The IVs hurt sooooo bad......how do you all handle this? the doc said that after this...I would need IVIG about every 3-4 weeks outpatient!!!


Sorry for the LOONG post....but I am so worried! He told me to go two doors down and see the patient...because she has severe MG...I am scared to see her!

[DM]

Hi Stephanie! Your post really touched me. I just wanted to say I really hope the IVIG helps and that you are up and out of that hosp in no time. Erin was right in that everyone reacts differently to meds and you may do really well on the Imuran. My DS was on it yrs ago and had no adverse side effects.

When I started looking up all the side effects of the meds I'm on, it sort of freaked me out too, but even my DS's anti-rejection meds are harmful to him, at the same time as they are helping to keep his kidney from rejecting. It's just what we have to do to function.

Hope you can get some rest tonight and that tomorrow is a better day for you. Try not to worry.

Sending hugs and prayers to you.

[ras1256]

Hi Stephanie and welcome to our group!

It sounds like you've done the typical reaction to MG - try to over power it and it will go away. Unfortunately, that tact doesn't work as you have found out. You will learn to manage the disease, which is the most important aspect of your treatment, and things will start to improve.

I was on Imuran and it really helped. It is also used to treat Cancers at much higher doses than we are given, I believe, and that's why the hair loss is listed on possible side affects. I, like Erin, still have just as much hair as ever.

Try to relax, and jump in with any pearls of wisdom you may get or any questions you have. Again, the important thing will be learning what your limits are and how to best manage your strength to prevent adding to the weakness.

Best of luck on your IVIG - just keep telling yourself it's only for a little while and try doing anything to distract yourself while the fusion is going on - and keep us posted how you are doing.

Lot's of Hugs!

[cricket001]

The doc mentioned a picc line...and I thought that it would stay in so that every two weeks...I would not have to keep getting stuck...he said that they would put it in...and take it out at discharge...then..so on...?? is this safe?

I am not sure about the dose...I think it had 3g on the bag...500ml bag i believe...I will pay closer attention to the bag...I guess I need to start writing all of my stuff down...so I can stay informed....they are also doing some lung breathing tests..and writing down numbers too?? but they are telling me that I am doing good after these...

Thanks for the advice--and the feedback on the hair...I am feeling so much better this morning.

Does MG cause numbness in your calves and feet? Does neuropathy come with MG? Are deep tissue massages okay if you have neuropathy in your feet and calves?? it is the only think beside "HOT" baths...that seems to help me...

Sorry to ask so many questions...I am finally coming to terms with this.

Stephanie

Originally Posted by erinhermes

Sorry to hear you are going through this.......MG just stinks - plain and simple!

You MAY want to ask for a PICC line - that way they only have to stick you once........it is a bit more invasive, but when I had my 1st round of IV IG it was a life saver!

How much IV IG are you getting? How often?

I am also on Imuran and it seems to be doing the trick, cuz' my pred is going to be lowered to 30 mgds this week - AMEN!

Hang in there hon! It does GET BETTER! Truly! You should feel AMAZING after your IV IG for at least 4 weeks! Imagine!?!

Big hugs!
Erin

PS As I said, I'm on Imuran and I still have a FULL head of hair - and there are always going to be side effects for EVERY drug out there - every drug!
Try not to worry too much!

[cricket001]

I will! Hey, I can always get a wig......but I am sooo glad to hear that you guys have not lost any hair!

Originally Posted by ras1256

Hi Stephanie and welcome to our group!

It sounds like you've done the typical reaction to MG - try to over power it and it will go away. Unfortunately, that tact doesn't work as you have found out. You will learn to manage the disease, which is the most important aspect of your treatment, and things will start to improve.

I was on Imuran and it really helped. It is also used to treat Cancers at much higher doses than we are given, I believe, and that's why the hair loss is listed on possible side affects. I, like Erin, still have just as much hair as ever.

Try to relax, and jump in with any pearls of wisdom you may get or any questions you have. Again, the important thing will be learning what your limits are and how to best manage your strength to prevent adding to the weakness.

Best of luck on your IVIG - just keep telling yourself it's only for a little while and try doing anything to distract yourself while the fusion is going on - and keep us posted how you are doing.

Lot's of Hugs!

[cricket001]

Thanks!! Today is a much better day. I am very hopeful that I get to go home tonight after my infusion. Doc mentioned that he might want to do 5 days..but he said that studies have shown that 3 days is as good as 5 days. I am planning on another round every 2 weeks after that. I can do this...I am going to put my big girl panties on....and find my healthy balance between work and rest!

Thanks for being here!

Originally Posted by DM

Hi Stephanie! Your post really touched me. I just wanted to say I really hope the IVIG helps and that you are up and out of that hosp in no time. Erin was right in that everyone reacts differently to meds and you may do really well on the Imuran. My DS was on it yrs ago and had no adverse side effects.

When I started looking up all the side effects of the meds I'm on, it sort of freaked me out too, but even my DS's anti-rejection meds are harmful to him, at the same time as they are helping to keep his kidney from rejecting. It's just what we have to do to function.

Hope you can get some rest tonight and that tomorrow is a better day for you. Try not to worry.

Sending hugs and prayers to you.

[Scots Kat]

Hi Stephanie,
I have lost some hair with my treatment, but thought it had to do with my pred, not my azathioprine/Imuran. Hmmm. My hair loss is all around the back of my head and by my ears where I put on my glasses. I figure the hair got really brittle and just broke off. It's starting to grow back now and no-one would notice except me (and my hairdresser)- so don't worry, no wig required! Good luck with your treament, hope you find the winning combination!
~Kathy