Addison's and Myasthenia?
 

Hi - Haven't posted for a while. Have had MG for several years - take CellCept, Mestinon and get IVIg every three weeks. Have been exhausted - more than the usual MG stuff. Had some blood work done last week and saw my doctor today - low blood pressure, low sodium, muscle cramps and bronze colored skin ( I live in Minnesota and we rarely look tan in the Winter!).. got referred to an endocrinologist to test for Addison's. Anybody else have that and MG?
Gabe

Hey, Gabe. Well, that would really suck. I have not known anyone with MG and Addison's but I'm sure it does happen. I'm just sorry if it's happening to you. Please be careful. Look out for that sudden fatigue (sleepiness or weakness) because that could mean it's getting worse or you could be going into an adrenal crisis (if that's what you have).

I hope your endo is a good one. And nice. As if MG isn't enough for any of us to handle. :eek:

Annie

Hi Gabe
 

I can't say that I do know anyone who has both. My Mom has Addison's Disease. They are thinking I might have MG and with my Mom and I talking we have discovered she is now having new symptoms that sound like it could be MG. I hope you don't have both but I'm curious to see what the endocrinologist has to say. I hope you get some answers quickly.

Kristie

Sorry Gabe, can't help with any connections. I just wanted to say I'm sorry - that really is double whammie! You poor man - you must be just absolutely dragging!

I hope they get it pinned down and treatment going, so you can get your life back. How soon do you see the Endo? Hope it's real soon.

You be careful, from what I read Addison's has it's own "crisis". I don't know if you got much information on Addison's, so here's a link I found.

http://www.endocrine.niddk.nih.gov/p....htm#treatment

Best of Luck and Lots 'O Hugs to you, Gabe. Keep us posted, ok?

Thanks
 

Thanks all- have no clue if this is Addison's or if it is just fatigue. Made an appointment with the endocrinologist today for June 3. Will keep you posted

I have no adrenals (which is the same as having non-functional adrenals, except, well, I have no options, I don't have any fallback but meds where your adrenals may produce some) and I have MG. I had Cushing's disease before (too much cortisol - like taking too much pred) and had to have them removed or I was going to die - and oh yeah, you cannot live without your adrenals so you have to be careful. You need to find not just any endocrinologist, but one that knows what they are doing. Not all of them know how to test, or how to treat. Too much is as bad as too little (hence why those on lots of pred get Cushingoid).
I have a lovely tan (hah) too.
ACTH is the cause. It is a very fussy test - you must get the tech to do it right, or the ACTH will degrade and your results will be lower than you are. It has to be spun and frozen promptly - minutes, even seconds count - I get 800+ point variations in mine and the range is only 5-27 so you can imagine it is hard to get an accurate test if your tech is an idiot (combined with an endummy), you will get no where.

This is good reading too:
http://www.addisons.org.uk/info/manual/page1.html
Make sure you have extra steroids, take them properly, and have an emergency kit. Stress dosing when you are sick is also necessary - you basically have to do with pills what your body would but cannot do naturally and guessing - and you have to do it accurately. Get a medic alert bracelet too.

Let me know if you have questions - there is a lot to this.

June 3rd?! Wow that seems like a long way out if it is Addison's. It took my Mom six months of in and out of doctors offices and hospitals to get an answer, but Addison's wasn't suggested until the day she was diagnosed.

Not to scare you but my Mom was to the point that she couldn't move, talk or open her eyes by the time she finally got her answer. She was told that if they had waited another day she would have gone into a coma that they could not bring her out of.

She has to go to the hospital and have a shot of steroids any time she gets overly stressed, either physically or mentally. Even if it's just a stomach bug.

Is there any way you can request that they order the blood test now, that way if it is Addison's maybe they will move your appointment up? I really don't want to panic or upset you I just want to make sure you take this seriously.

My Mom leads a fairly normal life, she just can't over stress herself. After ten years with this disease her doctor has told her now that she shouldn't be working any more than a couple days a week, but it wasn't like that in the beginning, and her body didn't just attack her adrenal gland, it completely destroyed it, there's nothing left of it. Her doctor said that was fairly uncommon in Addison's.

I really hope you get an answer fast.

Good luck.
Kristie

[FONT="Comic Sans MS"][SIZE="3"][COLOR="Navy"]Hi Gabe, It has been a while, nice to see you again.
I don't remember the cause, but I have known several MG'ers who developed Addison disease.
I've had small problems with my adrenal glands, but nothing too serious, and I hope it stays that way.

Best of wishes to you,
love Lizzie

Thanks for all of the info - I do have a call in to my primary doctor and am waiting to see if I can at least get the test before June 3rd. I'll let you know how it turns out

So sorry to hear you have an overlap disease going on, I to am going through that right now, also. Very scary !