Hi, My kidney biopsy came back, and for the most part, it is Not the CycloSporine that's causing the kidney damage. It is from long term Uncontrolled high blood pressure, with some damage from the cyclosporine.
IVIG and Plasma are bigger no no's than the CycloSporine, so we're staying on CycloSporine, and will monitor me closely. Both my Nephrologist called me, and my Neurologist called me.
You know, I've complained about certain past doctors, and have heard others say how awful some doctors can be, I really wanted to take a moment and say, I have a great team of caring, concerned, loving human being, for doctors. And in addition, are very good at what they do. I'm just so thankful for them, and all they do.
So, after all that worrying, and stuff, I'm staying put medicine wise.
I'm so tired. I've had a lot of medical stuff this week. Next week, i can't believe it, I don't have any apppointments. yay.
First time in Months.
Gonna try and get some stuff done around here. Slowly at my own pace.
Love Lizzie

Hi Lizzy,

I am so glad this week is behind you and you finally got some answers. Are you doing alright on just this med? I am not familiar with it. It is good to hear you have such great doctors taking care of you. My GP recently retired and the doctor that replaced him had to look up MG on the internet before he came into the room to see me! I do have a great neurologist and neuro ophthalmologist though. Take care and rest this week...you deserve it!

Hugs,
Pat

Lizzie, I'm glad you survived the biopsy. I can't imagine what that feels like. I've had a muscle biopsy and that was bad enough.

I have a boatload of great doctors and am extremely grateful for them as you are. It's unfortunate that there are doctors out there who are not so great or who let their personal prejudices get in the way of being a good doctor. I wish that weren't the way it was.

Isn't that an amazing feeling? To not have to go to the doctor and be able to concentrate on "life" instead? Both of us have had way too much doctoring for one lifetime.

Annie

great news-isn't it funny how we remember the bad ones and take the good ones for granted kind of like spouses. glad biopsy went well and hope you enjoy your appointmentless week ahead. have a great w/e!!

Hey hon! Glad to hear that the cyclosporine isn't totally to blame, but dang (!) no IV IG or plasma? It must be really hard on the kidneys!

You are so right about the whole dr thing! It is also your wonderful personality that MAKE them want to help you - much easier to deal with a pleasant person than a sullen one, ya know?

I love my drs and nurses! They have been so kind and wonderful to me! I tell them all and give them little gifts - nothing expensive @ all, just little things that I pick up @ Walgreens during the week to show them how much I appreciate them!

Had a really, really busy day today! I didn't get home till 8:30 - I hope I don't have to "pay" for it 2morrow!

No appointments for a WHOLE WEEK? That sounds like Heaven! I am so happy for you! Enjoy it! Is your daughter still @ home? I hope so!

Big hugs!
Erin

Good Morning,
Feeling a little sick today, but wanted to say thank you all.
Pat, CycloSporine is an old trusted MG med, that's been used for many years. I can't use the Cell-cept, which, was wondering for my MG, but it started to shut down my kidneys. I cried when I had to go off that one.
Imuran was horrible on me, sicker than sick with it, and got so violently ill, that my cardio believes it caused me a very mild heart attack. So, they tried the ole' stand by CycloSporine

Oh Annie, you sure said a Mouth full of the two of us seeing our share of the bad doctors before we found the good ones.
It's why, I tell people, not to give up on doctors, keep searching. Although, I never had any problems really with an MG doctor, but I had some awful other ones, like one Orthopedic doctor, that should have Never had gone into the medical field. I'm so glad you found some good ones, you deserve it, you've gone through the mill, to say the least.

Christmas...thank you,and this is why, I wanted to take a moment to say something good about doctors. There really are good ones out there, who really do care. The bad ones cause so much damage to us emotionally, it's hard to trust again afterwards.

Erin, The kidney biopsy wasn't bad at all. I was mostly out of it during it. And the doctor who did it, was very sensitive to my being comfortable, which helped a great deal. I find, being sedated during those kinds of precedures, are very much welcomed...lol...funny how that is...
For the muscle biopsy, did they give you anything? I told them, if they needed to put me under even further, they could even use one of those rubber mallets that are used for reflexes.
Love Lizzie
I'm going to go rest today, I'm still pretty tired, and feeling sick today.
Love you all.

Hey hon! Hope you feel better soon!

You have really been through the wringer with this, but you are always so upbeat and positive - a real inspiration for the rest of us!

Hang in there sweetie! We love hearing from you!

Big hugs!
Erin

Woah... waitaminute. Who told you plasmapheresis is hard on the kidneys? Or is it a no-no for another reason?

They use it in transplant patients so that their antibodies don't destroy new kidneys. Nobody told me anything about risk of kidney damage when I had my plasmapheresis and they're very particular about giving you all the potential risks including the *very very very* slim chance of blood born disease being transmitted.


EDIT: Glad to see you're appointment free this coming week, enjoy it and relax at least some

Lizzie, They can't give you anything or knock you out during a muscle biopsy because it would interfere with the results. So if any of you can't handle pain, lots of pain, a muscle biopsy is not for you! They can only numb the skin and not the muscle.

Annie

I had a muscle biopsy before being diagnosed with MG and it did not hurt badly at all. When I would feel something the doctor would inject some more numbing medicine and he even told me he had to go deep because my arm is rather fat although he didn't say it in those words.