[erinhermes]

Hello all!

Just wanted to say "Thank you" to all of you who were so kind and checked up on me! This truly is an amazing site and I am so happy I found it!

As you know I was in for the "dreaded" (in my case) plasma exchange - I also had a RAGING case of thrush that hasn't gone away for months, so my "short" stay turned into a nightmare!

Usually I just feel tired after the exchanges, however this time I blew up like a balloon! I'm not kidding! Ankles and legs the size of my thighs - so much so that my feet and ankles are now bruised from it......then my pain went through the roof when my pain patch was reduced from 75 (and @ one point 100) to 25 due to the diflucan.....apparently I had a small spinal fracture (that the docs claim is from trauma but I think is from the pred) so my dear, dear Dr. ordered every type of doc in to test me.......thyroid is low, lungs are perfect, MG SEEMS to be in order.........we'll wait and see!

I was also dx'ed with piriformis syndrome - painful is an understatement but my new walker is helping bunches. I'm still getting used to it. It is embarrassing but @ least I can get around now.

I'm so glad that my PT refused to work on me a few weeks ago - it could have been really ugly. I was told @ that time that there was nothing wrong with my back but knew better!

I also lack a brachial vein in my right arm, but that is OK with me cuz' the whole shunt idea is OUT! No more plasma exchanges for me!

I have also had a spinal tap and cortisone shot in my butt for the pain, but it didn't help one bit. The spinal tap was fine! I was actually able to SLEEP through it (I have a pretty high pain tolerance)......

I'm trying a new combo of meds to help with the pain and hope that it holds out and don't need the walker soon.

Enough about me - how are all of YOU doing? I've really, really missed all of you!

Have a strong and HAPPY Thanksgiving!

Love,
Erin

[neutro]

Hi Erin,
I really feel so sorry for what happened to you, you always praised so high plasmapheresis, your "liquid gold" as you said, and now, no more...?
I missed your previous post because I started my plasma exchanges a few days ago to try to cope with my relapse.
I hope they'll find soon good answers for your case.
Keep faith and maintain your spirit high!
Maurice.

[erinhermes]

Hey hon! How are you today?

I LOVE IVIG not that other - the plasmapharesis always makes me feel yucky but this time it was one pain after the other..........

My Dr. THOUGHT it was why my back was hurting all of the time but now I've been dx'ed with that other weird syndrome I think I am home free - I just pray that my port was worth it!

Are your kids coming down for the holidays? Have you been OK?

Love,
Erin

Originally Posted by neutro

Hi Erin,
I really feel so sorry for what happened to you, you always praised so high plasmapheresis, your "liquid gold" as you said, and now, no more...?
I missed your previous post because I started my plasma exchanges a few days ago to try to cope with my relapse.
I hope they'll find soon good answers for your case.
Keep faith and maintain your spirit high!
Maurice.

[suev]

Erin,

Happy Thanksgiving to you and yours! Y'all have rally been though tough stuff the last few months!! I am so sorry it has been like this.

I glad your neuro has so much empathy - and is willing to call in so many other docs for opinions. It sounds like they are really trying to figure out what's going to work best.

But if things haven't gotten significantly better by New Year -I would encourage you to get a fresh set of eyes. Your neuro seems so open-minded, he would not be offended if you decided to get a second opinion from Dallas (UT Southwest was it that has an MG specialty?). It might not help -- but what could it hurt?

Anyway, not to worry about for now. Let's hope the next 5 weeks have you improving every day.....PAIN FREE!!

Hugs,
Sue

[Alan53]

Hi Erin
you would think by now that life with MG would of been easy what with all the drugs their is out their
I'm sure you will still get their sooooon and hope your soon back feeling strong again oh and happi thanks giving hope the family are all well
big hugs
alan

[erinhermes]

Hey hon! How are you? Is is beautiful and cold there?

How did your visit with your mom and daughter go?

Are you feeling better? Has the Dr cut your pred back @ all? Any problems breathing?

You would think that in this "modern" age things would be simpler, but I may be some sort of mutant for all I know........LOL!

I can't wait to hear from you!

Love,
Erin

Originally Posted by alan53

Hi Erin
you would think by now that life with MG would of been easy what with all the drugs their is out their
I'm sure you will still get their sooooon and hope your soon back feeling strong again oh and happi thanks giving hope the family are all well
big hugs
alan

[erinhermes]

Hi honey!

You are so right about another opinion - I've been beating my head against the wall for a while now trying to figure out why things keep going downhill........this whole walker thing has thrown me for a loop!

I know my dr is amazing and truly cares so I doubt that he would be offended.

How are YOU? How was your turkey day?

Love,
Erin

Originally Posted by suev

Erin,

Happy Thanksgiving to you and yours! Y'all have rally been though tough stuff the last few months!! I am so sorry it has been like this.

I glad your neuro has so much empathy - and is willing to call in so many other docs for opinions. It sounds like they are really trying to figure out what's going to work best.

But if things haven't gotten significantly better by New Year -I would encourage you to get a fresh set of eyes. Your neuro seems so open-minded, he would not be offended if you decided to get a second opinion from Dallas (UT Southwest was it that has an MG specialty?). It might not help -- but what could it hurt?

Anyway, not to worry about for now. Let's hope the next 5 weeks have you improving every day.....PAIN FREE!!

Hugs,
Sue

[AnnieB3]

Erin, I hope the doctors will figure out all that is going on. I really think they're still missing something. Sorry the plasma didn't go well. Your reaction worries me. Have they done an ankle brachial index on you? Have they looked at other arteries as well? It's not funny but kind of "funny" that you kept on telling them you had a back issue and they kept on insisting you didn't.

Have a good holiday.

Annie

[erinhermes]

Hi hon!

I think they are missing something as well - my reaction was really weird - you should have seen my feet! They were literally cracking under all of that water weight.....it was really painful!

No ankle brachial on me. I'll ask for one. I did have a doppler done when all of the swelling began and it was OK.

I am still mad that I kept insisting that my back was really hurting and was kind of blown off by the "experts".......

How are YOU? Did you have a wonderful Thanksgiving?

Love,
Erin

Originally Posted by AnnieB3

Erin, I hope the doctors will figure out all that is going on. I really think they're still missing something. Sorry the plasma didn't go well. Your reaction worries me. Have they done an ankle brachial index on you? Have they looked at other arteries as well? It's not funny but kind of "funny" that you kept on telling them you had a back issue and they kept on insisting you didn't.

Have a good holiday.

Annie

[redtail]

Hi Erin,

wow, great to see you back and replying to everyones posts!!!
You have been through alot lately you poor dear. why is it that dr's don't seem to listen to us, I mean we live with our bodies everyday!!!
I remeber when my neuro said I was depressed, when I was having huge neck problems. Well I mean of course I was depressed, but it wasn't causing my neck problems. We have a better understanding of each other now!!!
I'm off to Perth for a sleep study on Sunday, as I'm waking up feeling I havn't slept at all lately. My gorgeous big sister is taking me up, so we will be spending time together, which always makes me happy.
Hope you are doing ok today, thinking of you
take care
Kate