Saw the neuro today
 

....and am scared to death. :Sob:

he thinks maybe Hashimotos Encephalitis.

Anyone have any insight or information.

Anyway he sent me to a special rheumy.

But I cannot go on feeling like this anymore. :Noooo:

oh God please help me.

I am sorry I am beside myself right now.

Hi Shelley :hug:
Im sorry you are having a real tough time at the moment, I cant help with the H E, but know Im thinking of you and sending positive thoughts:circlelove: . I know how stressful waiting and not knowing, I went through it being diagnosed with myasthenia gravis, they thought it was ms.
take care :hug:

Shelley, I'm so sorry you are having so much distress right now. The good thing is that getting a definite diagnosis is the first step toward getting treatment! Try to keep positive through it all. I know that's easy for me to say, and dificult to do, but I know from experience that it does help.
Hugs,

Please Shelly!
 

Calm down. While this is a terrible disease, you at least have a name for it now and it is treatable with medication. And can usually be controlled. Here is an article from Mary Shoman. She is one of the best http://thyroid.about.com/cs/hashimot...phalopathy.htm

And then there is this young lady's site : http://www.thyroid-info.com/helps.htm

Maybe you will get some answers to your questions there. I don't have anything more at this date. Try to stay calm, it CAN be treated.

Billye

Thanks everyone. I am sorry I just cant stop crying right now.

Oh, Honey...
 

Shelley, You can have my...
 

'Been there, Got That' Tee shirt if ya want it!
I just got promoted from hypo-thyroid to Hashi's this spring....I've always 'wondered' if the thyroid wasn't playing games with other stuff.
I'm going to forward some sites I dug up while trying to figger things out myself. Thyroid and other 'endocrine' stuff, well, it runs all over the map...and mimics soo many neuro issues it's down right scary that we ever get diagnosed with anything at all!
Please don't panic untill all, and I mean ALL the tests are in! Promise? - j

Shellley
 

It's so hard to think,oh boy here we go again and not to mention,
a new Dr. I know why your crying,fear of the unknown. That's ok
you have a right to that fear. So if you need to go ahead and cry.
Soon enough you will know more about it,understand more and
before long they will slow down. But until then go ahead and cry,
we will be here if you need us,just like you aways have been for us.
:hug: :hug: :hug: to a sweet and kind person. Sorry friend, Sue

How are you doing, Shelley?
 

the stress is so hard to deal with, I know.

Do you have any techniques to share...?

I can't get started today because the task I'm faced with seems impossible to have any success with... yet I have to do it...

so if you have a way of minimizing the effect of stress on you, boy would I love it if you shared.

(((((((((((Shelley)))))))))))

Stress, its like a candy to me. I dont like the health stress I have been dealing with but I so used to love my job stress. I have a stressful job where you have to live on the edge and always be anticiapting. Its was great but I think it contributed to how I am now which is sick.

How do I deal? I break things into individual pieces so I cannot see the overwhelming whole and get things done that way I guess. But I am certainly not as good at it as I was before.

Thanks for the hugs

Well nothing definitive on the Hashi's enceph. But docs and I agreed the thyroid is coming out. One thing at a time and then we will see if the neuro problems persist or decrease.

I am scared of so many things lately. What happened to that girl that once was going to conquer the world. It is conquering me. :(

Oh gosh Shelley I didn't see this before :( :(

did you see this site by a lady that had/has it {HE}
http://www.orgsites.com/fl/hashimoto...y-casestudies/

my mom had a very rare condition which then led to a second condition-BUT she made it thru all the crud and treatments. Both conditions are in remission now.

:hug: oh Shelley! so sad to hear you are having to deal with this scary health time:( Praying that you get clear answers and effective treatment. Not knowing what is going on and how best to treat it is often sooooo much added stress so I pray for peace for you too, and the ability to get good restful sleep

lots more very gentle ((((hugs))))
Cheri

Thanks Cheri,

Well since the thryoid is so inflammed I will be doing a medrol dose pak just for fun. Party time

The other interesting thing is that I did a saliva test for neurotransmitters and sure enough with thryoid seems to go adrenal fatigue. Two for the price of one. :mad:

Oh Goodness!
 

What can one say to that other than OUT DURNED SPOT!? It's like cancer...get the potential poison outta ya! NOW!
Then, you ask, NOW WHAT?
My answer would likely be: PATCH PATCH PATCH
What else can be said? :yikes: :yikes:
I somehow suspect that your mind is running rampant with ALL the what-if's big time tho...I do know that mine did? I really had to conciously TURN off that part of my mind...wasn't easy, but worth it :Wheel: - 'sometimes you're the windshield, sometimes you're the bug'? - j

Thanks J-

I really do think that the thyroid being out will be a benefit for controlling it as well as getting rid of the inflammation in my neck which aggravates the TOS. And thryoid is know to cause nerve problems and boy do I have nerve problems. And the thryoid is not treatable right now with the meds its all over the place.

So my gut says get it out and then deal. Many people live fine without their thrydoids and I am not living fine with mine that is for sure.

Not all the docs agree but I guess I need to make a decision.

Maybe I should make a poll and have everyone vote...thryoid in or out :D

There is soo much I want to
 

say, and many thoughts are running thru my mind ---chock full of WHAT IFS? I'd seen that website before, but never really READ it, it's a keeper for sure,- jo

I'd have so many cross-over SX's with the CIDP...and I recall asking my neuro time and again: What about the Thyroid? The answer was always....probably not.

That was tested thoroughly tho during my cancer diagnosis and pre-op preps.. So I had thought, the s/e's of 'post-cancer' "therapy" [really chemo] is what aggravated osteopenia to porosis big time. And, it was the thyroid! So, maybe, getting the cancer, and getting it OUT, saved my life for the long term? Good thing maybe - the sad thing is thyroid stuff mimics so many other issues/conditions/diseases. I am told by my endo that for all intents and purposes, my thyroid is dead. It's the meds that have saved me [sort of] yet masked the dying process all along.

I don't know if the CIDP was caused by the thyroid, or the other way around or even some other fateful set of circumstances.

SHELLEY - it sounds to me that you have made up your mind, you are just scared about it. That's my take on it all. I'll be here when you need me - j

:hug: :hug: :hug: :hug: :hug: :hug: :hug:

awww sweety, i know i haven't been around much in the past month..or been here for you. i am so sorry.

i am finally moved and have internet. let me know what i can do. :hug: :hug:

Wow I have Hashimoto's Thyroiditis but had never heard of the H. Encephalopathy! Scary! But it looks as though they can treat it...
I hope things will work out in your case!
Try TRY not to worry!!! I'll keep you in my prayers!
Hugs!!!
Critter