[erinhermes]

Hello all!

Last night was a nightmare! Apparently my right arm is "used up" - no good veins @ all! THe lady tried for 2.5 hours to place a PICC line and just wasn't able to - AUGH!!!!!!

Now my right arm had track marks all up and down it!!!!

On the positive side, my left side has a few good veins left, and she was able to place the line in under 10 minutes!

It truly was a "worst case" scenario for a person who is terrified of needles!!!

We were there for about 10 hours last night, but hopefully 2night will be better!

Talk to you soon!
Erin

[kristy]

Hey Erin,
That is TERRIBLE about your veins.
Hope tonight is better for you.

Kristy

[Gabe]

Hi Erin -
Sorry to hear about the trouble with your PICC line. I get IVIG every three weeks - finally hada permanent port placed in my chest wall about 1 1/2 years ago. When I first had IVIG they used the veins in my arms and hands until they couldn't - then suggested a port. It took a long time for me to agree to it - felt like another concession to this disease that I didn't want to make. Now I can honestly say it was one of the better choices I have made. It takes them about 10 seconds to access the port and hook me up for my infusions. It is under my skin so not as much risk of infection. Not sure how often you will have to get IVIG but if it turns into something long term it might be something to consider.
Gabe

[erinhermes]

Thank you guys so much for responding! I really appreciate it!

Last night was a lot better (for obvious reasons)......., of course I was a little late due to traffic and my neuro was already walking the halls looking for me - not fun! I felt like I was in grade school again!

I do realize that time is of the essence where IV IG is concerned and told him that I would be there @ 6:00 come hell or high water.........

The nurses @ the Methodist are so sweet! They really love their jobs and it shows! It is a great hospital to go to - if you have to go!!!

Gabe - are you still on steroids or are you exempt cuz' of the IV IG? Do you take Mestinon? Cellcept? I would gladly trade steroids for rounds of IV IG!!!
My doc doesnt want to have a perm port put in just yet - my hema does though - it's all so confusing!!!! All I DO know is that my veins that used to be so great are all dried up and useless.........Did it hurt when they put your port in? Did it leave a big scar? How long ago were you diagnosed? Did you have your thymus removed? I'm sorry for all the questions, but there are so few people that have MG and I'm still a newbie with all of this!!!!!

Kristy - how are you today? Are you feeling better? I know you were weak before, but have you gotten any of your strength back? Do you have a support system? Do you have any children? I have one - he's 16............

Again, thank you for responding! I'd love to hear form you both when you have time!!!!

Erin

[Gabe]

Hi Erin -
In April of 2004 I was having a great deal of difficulty swallowing - had Optic Neuritis in my right eye the previous October - Went to my primary doctor and was referred for MRI's to rule out MS - MRIs were normal so she did more tests. I was diagnosed by an antibody test by my primary doctor in June of 2004 she sent me to a neurologist who confirmed the diagnosis with another series of antibody tests but then sent me to a specialist at the University of MN because he was concerned that i might have ALS or MS rather than Myasthenia Gravis. He put me on Prednisone and Mestinon in July of 2004 and I saw the neurologist at the U in October of 2004. He did some more blood work and a Single Fiber EMG but I was on Prednisone and Mestinon at the time so all of the tests were normal. He then admitted me and took me off the meds for three days and repeated the tests - the SFEMG was wacky but not conclusive.

My regular neurologist said that the Prednisone would have still been in my system (was on 60mg a day at the time) so he wasn't happy with the U of M findings. He referred me to Mayo Clinic - took a long time to get in but was finally officially diagnosed by the neurologist at Mayo Clinic in January of 2006. I had a thymectomy in the Spring of 2006. Was on Imuran and Prednisone but apparently had an inability to metabolize it and my liver functions were off the charts - switched to CellCept a year ago in November and take 3000mg a day - I am off the Prednisone because I developed Osteoporosis and my blood sugars and cholesterol were elevated. I started getting IVIG in the Spring of 2006 and have been receiving it every 2-4 weeks for the most part. My veins couldn't take it - IVIG is very hard on your veins.

The port is about the size of a quarter. they made a slit about 1 inch long to put it in. Compared to my thymectomy scar it is nothing - in fact the scar from my chest tube from the thymectomy is bigger.
Gabe

[erinhermes]

Gabe! Thanks so much for sharing your story! MG is such a tricky disease! For me, it took being so weak that I wasn't able to breathe on 3 different occasions to finally see my dr (who referred me to my neuro) to be diagnosed.

By the time I was finally diagnosed, my antibodies were @ 600 - really high (according to my neuro)....................It was the scariest time of my life. I truly thought I was going nuts!

I hadn't even HEARD of MG @ the time..............

I thought it was so funny that you told me to drink lots of fluids after IV IG, cuz' when I get home, I drink about 30 oz. of milk/juice/whatever and am parched! Granted, I still "drink" with a spoon (palette issues) but am able to swallow - golly that feels good!!!!!

I am thinking about having a permanent port put in - I think it will really help with future IV IG. I have track marks up and down my arms, and scratches from the last round of PICC line placement..........

I hope you don't mind my asking, but how old are you? I have heard that MG usually affects women between 20-40 and men over 60 - is that true?
Do you have night sweats? Now that my prednisone is back @ 20 mgs, I wake up just miserable!

I'm going back in all this week for more rounds of IV IG, and feel pretty dran good today!!!!

Take care!
Erin

Originally Posted by Gabe

Hi Erin -
In April of 2004 I was having a great deal of difficulty swallowing - had Optic Neuritis in my right eye the previous October - Went to my primary doctor and was referred for MRI's to rule out MS - MRIs were normal so she did more tests. I was diagnosed by an antibody test by my primary doctor in June of 2004 she sent me to a neurologist who confirmed the diagnosis with another series of antibody tests but then sent me to a specialist at the University of MN because he was concerned that i might have ALS or MS rather than Myasthenia Gravis. He put me on Prednisone and Mestinon in July of 2004 and I saw the neurologist at the U in October of 2004. He did some more blood work and a Single Fiber EMG but I was on Prednisone and Mestinon at the time so all of the tests were normal. He then admitted me and took me off the meds for three days and repeated the tests - the SFEMG was wacky but not conclusive.

My regular neurologist said that the Prednisone would have still been in my system (was on 60mg a day at the time) so he wasn't happy with the U of M findings. He referred me to Mayo Clinic - took a long time to get in but was finally officially diagnosed by the neurologist at Mayo Clinic in January of 2006. I had a thymectomy in the Spring of 2006. Was on Imuran and Prednisone but apparently had an inability to metabolize it and my liver functions were off the charts - switched to CellCept a year ago in November and take 3000mg a day - I am off the Prednisone because I developed Osteoporosis and my blood sugars and cholesterol were elevated. I started getting IVIG in the Spring of 2006 and have been receiving it every 2-4 weeks for the most part. My veins couldn't take it - IVIG is very hard on your veins.

The port is about the size of a quarter. they made a slit about 1 inch long to put it in. Compared to my thymectomy scar it is nothing - in fact the scar from my chest tube from the thymectomy is bigger.
Gabe

[Gabe]

Hi Erin -
I gave you the brief history of the MG drama in my life ... in spite of being diagnosed and undiagnosed then rediagnosed eventually there were a million bumps in the road on the way. I had never heard of it before and still only know a few people other than on this forum who have it.

My MG started with my voice and swallowing - then generalized to the rest of my body. Without IViG I have a great deal of difficulty with my hands - especially my fingers and it also affects my legs - feels like I am walking through a swamp with 10 pound weights on my legs. Most of my symptoms are manageble but the swallowing thing is the most challenging and probably the most dangerous. I just had aspiration pneumonia again at Halloween.

I am 45 years old now. I am a female in spite of my nickname Gabe - my real name is Gabrielle and my parents pronounced it more like Gabriel so my nickname is Gabe. I do have nightsweats and especially in the days following IVIG.

[erinhermes]

When were you initially diagnosed? Are you OK now? MG really is tricky! I had never heard of it before either................Do you have the Musk(?) MG?
Missy has that one and it really affects her swallowing..........

You are so brave! I was so scared about the whole swallowing thing - it was truly terrifying!!!!

Do you have a good neuro? I for one am so thankful that I have Dr Ibrahim! He was a real life saver!!!!!

Today is my last day of IV IG - YAY!!!!! I get my PICC line out tonight and can resume my "normal" life!!!! Happy days are here again!

This site has been the best thing that has ever happened to me! Before I found this, I was so scared all of the time. I was afraid to even leave my home (for fear of another attack), but am so much happier now!!!!

Take care!
Erin

Originally Posted by Gabe

Hi Erin -
I gave you the brief history of the MG drama in my life ... in spite of being diagnosed and undiagnosed then rediagnosed eventually there were a million bumps in the road on the way. I had never heard of it before and still only know a few people other than on this forum who have it.

My MG started with my voice and swallowing - then generalized to the rest of my body. Without IViG I have a great deal of difficulty with my hands - especially my fingers and it also affects my legs - feels like I am walking through a swamp with 10 pound weights on my legs. Most of my symptoms are manageble but the swallowing thing is the most challenging and probably the most dangerous. I just had aspiration pneumonia again at Halloween.

I am 45 years old now. I am a female in spite of my nickname Gabe - my real name is Gabrielle and my parents pronounced it more like Gabriel so my nickname is Gabe. I do have nightsweats and especially in the days following IVIG.

[MissyGirl]

Yep, I have MuSK MG and also have a port. Yep, I'm a girl who has it all.

[Gabe]

Hi again - I do not have MuSK Antibodies - tested positive for AChR binding and modulating - My primary doctor diagnosed me in May of 2004. Dr Harper at Mayo Clinic in Rochester MN finally confirmed the diagnosis in January 2006.
Gabe