[rumpled]

Or so it feels like it...
I was diagnosed with MG, then undiagnosed, now I just wanted to let you know that it is back! I have MG again, or at least tentatively.

Of course, it could just be depression, as that came up about 6 times. But I never knew that being said made a person choke. Or be weak in fact... the bed part I understand.

So he took blood for more *sensitive* tests and I am to go for all the swallowing tests and we shall see what comes of that.

I am anti-body free, and the rest of my tests are weird, just have a positive SFEMG. I just have symptoms. But my eyes are fine. Every doc differs on what this is or even is this is neuro.

Bad thing is that my pit tumor has decided to rear its ugly head again - my visual fields are impaired and my hormones have taken a dive. So I will be off for more for testing, MRIs and things - and I hope it can be resolved with surgery as I really really do not want radiation.

[Brennan068]

Oh, yuck. Sorry you're going through that kind of mess. Swallowing tests suck and I don't have all that much faith in the technicians who push to have you do them. I hope you have better luck with them than I did. Barium tastes horrible.

I hope everything works out for you. Fingers crossed.

Cheers,

Brian.

[redtail]

Aww Rumpled, that just not fair!!!!

Good ol' depression, if they can't find a problem with a person, they put it down to depression!!!

How frustrating that they all have different ideas as well, I know I sometimes go away from a visit thinking who do I believe!?!?!

I'll be thinking of you, and hope you don't have to have radiation!
Keep us up to date, and take care
Kate

[rumpled]

I had the barium ones - they were gross. I had a problem swallowing part of something, but then cleared it, so they put down normal. Great.
The next step now is the esophagal manomatotry one. The camera down the nose. All this takes forever as there is no local doc that performs this test.

[erinhermes]

So sorry to hear you are going through all of this bs........just not right!

Camera down the nose is not fun and my "brilliant" ENT told me I was just fine - this is when I was down to 100 lbs cuz' I couldn't swallow.........what a joke!

I think it is awful that WOMEN are always being dx'ed as "depressed" whenever we have our symptoms - I have told my doc for years that my energy level just wasn't right - I knew it wasn't, but they didn't believe me.......obviously the meds didn't work years ago - though they do help now with my anxiety.........

I wish there was something I could do or say to help.....know that you are in all my prayers!

hug:Erin

Originally Posted by rumpled

I had the barium ones - they were gross. I had a problem swallowing part of something, but then cleared it, so they put down normal. Great.
The next step now is the esophagal manomatotry one. The camera down the nose. All this takes forever as there is no local doc that performs this test.

[AnnieB3]

Rumpled, I just wanted to say that I'm sorry your docs don't know exactly what is going on. You have lots of endocrine problems and those can cause similar symptoms. I hope the tests go okay.

Annie

[rumpled]

Another question - when you choke - does it just - *happen*? Like we are watching TV and all of a sudden, I cannot breathe or swallow when just seconds ago I was just relaxing, watching an episode of house. I was not laughing or doing anything. This happens in the movies or just sitting, sometimes laying down - like I cannot control my saliva, but it it not an excessive amount - all is normal to dry even.

Yes, I do have a LOT of endocrine issues. They are er, somewhat stable except for the tumor coming back. According to my endo, the growth hormone can cause some muscle issue, but it just would not be to this extent. I do know a lot of people who have as many endo issues as me and they are not as weak as me. The neuro, besides saying it was depression, did also say maybe it was my life *not hyped up on steroids vs my life now normal* but my husband and I assured him that my weakness went further than that. I think not being able to change the fridge water filter, fighting to lift a gallon of milk, and changing cars as I could not get out of the other one is different than just normal weakness. Besides, I went to PT and the therapist noted that I made no gains, even though I did all my routines and the ortho prescibed full body therapy. That was on growth hormone.
Whatever, I don't need a new health problem anyway. Got plenty.

[erinhermes]

Hey Jen!

When I was very weak, my episodes - problems swallowing - just appeared - no rhyme or reason..........

Obviously that was really scary.......I remember being in the booth having my cat scan done and foaming @ the mouth b/c I wasn't able to lift my head and swallow--------longest 15 min of my life......but at that time I just thought I was going crazy, no idea I had MG yet...........

Hang in there hon!

Big, big hugs!
Erin

Originally Posted by rumpled

Another question - when you choke - does it just - *happen*? Like we are watching TV and all of a sudden, I cannot breathe or swallow when just seconds ago I was just relaxing, watching an episode of house. I was not laughing or doing anything. This happens in the movies or just sitting, sometimes laying down - like I cannot control my saliva, but it it not an excessive amount - all is normal to dry even.

Yes, I do have a LOT of endocrine issues. They are er, somewhat stable except for the tumor coming back. According to my endo, the growth hormone can cause some muscle issue, but it just would not be to this extent. I do know a lot of people who have as many endo issues as me and they are not as weak as me. The neuro, besides saying it was depression, did also say maybe it was my life *not hyped up on steroids vs my life now normal* but my husband and I assured him that my weakness went further than that. I think not being able to change the fridge water filter, fighting to lift a gallon of milk, and changing cars as I could not get out of the other one is different than just normal weakness. Besides, I went to PT and the therapist noted that I made no gains, even though I did all my routines and the ortho prescibed full body therapy. That was on growth hormone.
Whatever, I don't need a new health problem anyway. Got plenty.