Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 06-27-2010, 06:50 PM #11
rezmommy rezmommy is offline
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Always sending good thoughts your way Erin. Feel better soon.
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Old 06-27-2010, 07:40 PM #12
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Default Hi Scrubbs!

Hey hon! So you know EXACTLY what I'm going through......every time I WENT to PT I had a new break, so it just did not work out............

I am on some pain meds, but they just aren't working, so my PCP just upped them.....let's hope they work!

How are YOU feeling? How long have you had MG?

Can't wait to hear from you!

Love,
Erin






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Erin;

I hurt my back about a year ago. I had steroid shots that did not help at all. And we have no control over muscle development (something my pain dr. did not understand). Physical therapy to improve my core muscles was impossable.
I talked to my Neuro because I have severe pain in my neck and shoulders either from the MG or the side effects of meds and put him in touch with my pain dr. I am now on a med for pain that my Neuro approved and I can not tell you how much it has improved my quality of life.
Maybe your Neuro will not prescribe something for your pain but if you can find a pain dr. that understands your desease he may work with your neuro to prescribe something to relieve your pain.
Good luck.
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Old 06-27-2010, 07:42 PM #13
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Default Hey Rezmommy!

Hi sweetheart! Thank you for being so sweet!

How are YOU doing?

Love,
Erin



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Always sending good thoughts your way Erin. Feel better soon.
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Old 06-27-2010, 07:48 PM #14
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Default Hi Trish

Hey sweetie! How are you? Gosh I've missed you guys!

I know it's a small thing, but 200 lbs on a small frame just hurts!


I'm using my scooter now. I just can't do it anymore, but I know things will
get better!

Let me know how you are when you get some time!

Love,
Erin


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Hey Erin, good to hear from you, but sorry you are not doing so well.

I have been putting on weight too, I hate it. I don't take Prednisone though which I know puts weight on most people.

I need to walk more to help with the weight, but sometimes I just don't have the energy.

I'll keep you in my thoughts.
Trish
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Old 06-27-2010, 08:11 PM #15
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when I first got diagnosed with mg, and couldnt believe how my body decided on mutiny, I was so discouraged and depressed I thought my world had ended.
It was reading your posts Erin, and some others here that convinced me to take it one day at a time and things will get better.
And I did, and I let my neuro and physicians do their thing, and Ive regained control to a certain degree.

You will always have my thoughts and prayers. I am sending you all the positive vibes I could muster from the Atlantic Ocean side of the country.
do you feel them? Im sending all the good stuff in hope you feel better soon, real soon.
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Old 06-28-2010, 10:03 AM #16
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Default Hi Erin

Oh Babes I really feel for you. Pain when it isn't being controlled is horrific. It wears you down and makes you so very tired (and sometimes a bit snappy ... well thats what my husband says!)

I'm seeing my GP this week as my bowel adhesions are back - what did I say about 6 months ago!!! (have had a few days in hospital)Basically my pain isn't being managed and I am asking the GP to either send me to a pain clinic or give me morphine.

So I hear you loud and clear! I hope they manage to sort you out soon as staying on top of the pain is very important as once its out of control its a wild beast to tame.

Im not on here as much as I used to be but I still read the posts.

Ive really missed you Erin as you give such a positive sunny approach to things. Im just so sorry that you are having all this rubbish thrown your way.

The weight will go as they reduce the Pred. Im now back to my pre pred weight I put on 3 and a half stone and its taken a year to get it off. However I still have a bit of a hump on my back but Drs have said it will take up to 2 years for it to go. So I wait patiently.....

I have adrenal fatigue due to Pred. So I can appreciate the addisons you now suffer with.

My heart goes out to you Erin and I keep you in my thoughts constantly.

Love
Rach
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Old 06-28-2010, 05:34 PM #17
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Erin,

I am glad to finally hear from you and have been thinking of you. I miss your positive words of encouragement to everyone.

I wish you the best. Take care of yourself.

Susan
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