[debralee]

Hello Everyone!!!!

It has been a long, long time since I've been on the boards. So many of you don't know me and I hope many of my old friends are still here.

Believe it or not I've finally gotten a full dx today. I was dx. as hashimoto thyroid about 10 years ago and fibromyalgia 5 years ago ........but I still suffered from unexplain neuro. pain.

I had more testing done 6 weeks ago and got the results today. I have been dx with hashimoto encelphalpathy (sp?). My bloodwork came back and my anti-bodies are double what it should. I am also showing a restriction of some of the arteries in the brain. He feels this is a result of the HE.

He is going to start me 60 mgs of predisone and ween me off in two weeks. He is hoping to put it remission without having to have me on long term predisone. If that doesn't work then he will decide if I should go on long term predisone treatment or try the plasma transfusion.

It is frustrating to think of the run around I've gotten over the years. The doctors were all so sure that this wasn't the problem and dismissed it. Now it turns out it has been the problem all along.

There will be permanent memory loss........but hopefully things will start to look up.

I will try to let you know how things go.

Love,

Deb

 

[Joandublin]

Hi Deb

Its great to hear from you again and Im so glad you have finally found out what has been causing all your symptoms. What a long journey for you but what a rare disorder to be diagnosed with, eh? It seems like there are only a few dozen people diagnosed with this in the US according to my quick bit of research.

I hope the prednisone helps you immediately and starts to knock this thing back. I hope the pred helps with your symptoms and that your doctors are going to monitor you more carefully from here on in

I found a website started by a woman called Beverly Seminara who has dedicated her energy to research and writing about this condition. There is a link on the site to 176 case studies of the disease and you can subscribe to her site if you think its of any use in terms of information, treatment information, etc.

http://www.thyroid-info.com/helps.htm

Best of luck Deb
Joan:rose:

 

[Katharine]

Hello Deb,

It's good to hear from you again and I'm glad that you now have some kind of sense being made of your problems.

I have plain normal hashimotos and have never heard of this. I hope that the diagnosis will at least lead to some relief - good relief.

good luck with the treatment,
Katharine

 

[LolaLola]

Hello, I don't know you yet but wanted to sympathise on the run around you have had. I wish you lots of luck,
x Lola

 

[Tom]

Congrats Deb, well sorta? I know it's been a very long road for you and I'm glad they finally figured it out. There is nothing more frustrating than knowing something is wrong and not being able to get help. Going through letdowns, all of the dead end testing, or the "Lets try this and see what happens" kinda thing.

After thinking about it, that's about how long it took me my DX as well. In my case it just took the right doctor who looked at the whole picture and put it all together. I'm sure your case was much more complicated. I do know how much of a relief it must be to finally have the right answers now.

I know you have been through very tough times through all of this. I hope now you can start the treatments you need to feel much better soon. Good luck! :hug:

 

[keebler]

Hi Deb,

It is great to hear from you.

What a relief to finally have a dxed. I know it comes with mixed emotions.:hug:

Take care and let us know how you are doing,
:flowery:
Lyn

 

[KarolH]

Hi Deb,

I am new here and do not know you from before but wanted to say I am so happy you finally have a dx and can take the right meds to start feeling better.

Don't stay away so long and let us know how your doing.

Good luck moving forward.:wink2:

 

[macfamily53]

Hi Deb

I am sure glad you did get a final diagnosis after such an aweful long timeeeeee.I have not forgotten you at all but have been wondering how you were doing.I sure hope they can get you feeling better somewhat and soon((((((hugs)))))).You have been through so much for so longggggggggg.I just hope you get some relief and soon.Please keep us in touch with how you are doing.

Tammy

 

[lin]

Hi deb , now they have got you on the right road, i hope very soon that medication will get you feeling somewhat better,

you hang in there Hugs Lin xxxxxxxxxxxx