Me + plasma exhange = awful!
 

Oh my goodness Erin,

You don't do things by half do you, you poor dear!!!!
No wonder you havn't been online. Been missing you, and worrying about you HEAPS.
I hope you hip pain/problem gets sorted out soon.

thinking of you, and hope everything goes smoothly from now on.
take care
Kate

me+plasma exhange=awful
 

Erin,
My gosh I am so sorry for all that you are going through but am so glad you are back!!! I have really missed your posts. Hopefully you will start feeling better soon. Take care of yourself.:hug:
Kendra

Erin,

I hope you are feeling better soon.:hug: Glad you are back.

Erin!!!!!

It's so great to see you posting! I've been thinking of you so much. Worrying that you're depressed or in pain . . . didn't know whether to bother you with a pm or not.

Anyway, sounds like you've been through it. Ugh. How do you think you got the fracture in your spine? Are your bones ok?

So glad you're back!!

:hug:

Ally

ERIN
so sorry you are having such a bad time,I will pray for you
Patrick

Hey Erin!

Been worried about you! Glad you are back and hopefully feeling a bit better. Pls. keep us all posted as you can.

Enjoy your Thanksgiving with your family!!
Sue

Erin,
Sorry that you have had such a rough time. Been praying for you and will continue.
Huge Hugs!
Simon

Damn girl....you are really going through it...I'm so sorry to hear about your pain. How did you fracture your spine?!!!! Oi if I could do anything to help you, I would in a heartbeat...I will pray for you. I'm glad to hear you are home...I hope you are able to enjoy Thanksgiving, and you start feeling better soon!!!
Hugs
Jessica

sorry to hear about the hard time you are having.

hope your MG is at least under better control.

I know that you are having very good medical care, but still things can sometimes be missed, even by the best physicians. have they checked why you had a fracture of the spine at your age. did they make sure that you do not have osterperosis? and did they make sure that your vitamin D levels are not too low, and that you are recieving enough calcium?

hope you do better soon,

alice

Hey Erin,

So sorry for all you've been going through. How have your MG symptoms been through all this? I'll be keeping you in my thoughts & prayers. Take care.;)

Big Hugs,
Pat

Hey Erin
 

Im so glad you have posted and let us know that you have been ok. Its sure been quiet on here without you!

OMG fracture on your spine, how on earth did that happen. No wonder you have been in so much pain! Glad they found it though.

So sorry your hips are still causing you problems. I get bursitis in mine and thats painful enough.

Sorry the Plasma exchange went a bit screwy.

Just wanted you to know Im sending you lots of hugs!

Im ok, got my appointment in Oxford on 16th December.

Love
Rach

Erin, seems like I remember you saying somewhere that you were normally a size 2 BEFORE Prednisone and MG. Sounds to me like you have teeny, tiny little bones. And, I'm betting the Prednisone has done a number on them -- making them VERY prone to fractures. Bless your sweet little heart!!:hug:

You have SUCH a wonderful attitude -- coming back from your HORRIFIC ordeal -- and asking how WE are......................girl, you are a SAINT!!! I am hoping that you feel 500% better SOON!!

You remain in my thoughts and prayers.

Gentle (((HUGS)))

Hi Kate!
 

Hey honey! No, I do not do things by half - ever! My dear Dr. told me that "You just HAVE to be symptom free by next year" with tears in his eyes........

I have seen an infectious disease specialist, a new endo, pulm, the whole nine yards............:D

How have YOU been? Are you OK?

Love,
Erin:hug:

Glad that you are back Erin, so sorry that you have been through so much. You are definitely in my prayers. I hope that you can get the rest you need to recover. :) Take care ~ Mel

So sorry to hear all you've been going through Erin - thoughts and prayers for your continued strength in spirit and body.

Sending some sunshine your way from The Bahamas...

Llakel

Hi Lizzie!
 

Hi honey! How are you? I've MISSED you!:hug:

I haven't been on Facebook for a loooooong time - I just prefer this site - tee-hee!

My fellas have been WONDERFUL! They have been spoiling me rotten, but I am getting antsy.....We are not going to have a xmas party this yr and I am not going to hang my garland - too much trouble, but I AM going to decorate as much as I can when I have the energy!:D
Seeing the house all lit up and cheerful makes me feel so very happy!:D

Just the fact that you care enough to check up on me makes me feel so much better. It makes all the difference in the world to me!

You are so sweet and I love it - and you!

How are YOU?

Love,
Erin:hug:

Hi Kendra!
 

chin
 

we all love you and the help you offer others:grouphug:patrick

Hi Desertflower!
 

Hi Ally!
 

Hey Erin,

I'm so sorry for what you've been going through...A spinal fracture sounds pretty awful!

I've been having major problems with my back recently too...Like severe pain...Bending down to get something is almost impossible...I agree with you that I think the prednisone is doing it...I just had like 10-xrays done, so I will find out hopefully what's up...

Is your pain mainly in the centre of your spine? mine is so bad that the muscles in my waist are spasming, and I'm getting these shooting pains in my waist that go down to my pelvis...

BTW, about your thyroid...Predisone causes TSH levels to decrease, even if your thyroid needs more stimulation for whatever reason...When I had my levels checked before starting the steroids, it was about 3.5...now, it's 0.75...It still looks normal, or is still in the normal range, but because I have antibodies attacking my thyroid, I need more TSH to keep it in check...i guess this is why they say that steroids are bad for people with hypothyroidism, because it reduces the function of the pituitary gland...So you were totally right about the prednisone causing the problem with your thyroid, or at least making it worse...It basically 'hides' thyroid problems if they exist....

Anyway, I just wanted to share this with you...I'm sure your doc. already knows about it...

I'm glad that things are getting figured out for you, but I'm sorry that you're in so much pain! What are they doing about the fracture?

ttys!
Nicky

Hi Erin,
I carefully read the information leaflet which comes with my vitamin C+D tablets and it indicates that the usual daily dosage is 1000 mg , 500 mornings and 500 evenings.
It also advises to take them apart from meals which contain food with oxalic acid (spinach, cocoa, tea,...) and phytic acid (nuts, seeds, grains, oat, corn, chocolate,...) due to possible reactions with calcium and formation of products which can cause kidney damages!

I had only 2 exchanges last week because I strongly object central ports due to infection risks connected to these and the intake of immunosuppressants. Two years ago, they fitted me with a femoral port which was awful as you may not walk , you must stay in bed during the treatment and of course, no shower aso...
I have thus to play it soft with my arm veins by taking only 2 exhanges per week, so far so good but I haven't feel any improvement (yet?).
Take care and I hope you'll spent a good week.
Maurice.

vitamin D, bones etc.
 

just a few points-

the amount of vitamin D in those tablets is not enough if you have significant vitamin D deficiency.

you can take as much calcium as you like, it will not do the job without Vitamin D.

the combination of steroid treatment and severe vitamin D deficiency is a pretty good way to ensure that you get osteoperosis. it can also lead to increased muscle weakness.

it is not that rare to have severe vitamin D deficiency, in the modern western world, due to decreased sun exposure.

the way to assess osteoperosis is by doing a bone density scan. a regular x-ray will not pick up osteoperosis unless it is very severe.

the good thing is, that if your osteoperosis is due to vitamin D def. it will be corrected at least to some extent with proper vit. D supplementation. this can also lead to some improvement in your muscle stregth.

our muscles serve as "shock absorbers" for our skeleton and when they are weak, we can have more trauma to our spine just by doing very regular things, even going in a car over a bumper too fast, or being pushed in a wheelchair less gently, etc. and such minor repeat traumas can eventually lead to small fractures.

learning to use your body in the right way, and making sure that you have proper support (eg-head rest, good cushion etc for a wheel chair), can help avoid such traumas, and hopefully prevent such damage.

I don't know if any of this is applicable,

but, as those are all correctable things, that can easily be overlooked, I thought it was worthwhile to mention them.

alice