New here need info on adrenal involvement.

[Seifert_09]

I'm am new here and have found a lot of good info via all the posts. I was diagnosed in 04 and until recently have not had any symptoms until recently . I now see a neuro who has me on baclofen for spasticity and seems to be working well, although it makes me pretty sleepy at times . MRI came back all clear so I'm good there .That brings me to my question I have yet to meet with an endocrinologist as I feel my adrenals are now involved and it is making daily life s bit rough . For those of you with adrenal involvement what's helping you as far as meds and diet any and all info would greatly appreciated .

[StevenSims]

Hi, I think it is really important to see a endocrinologist very soon! I've been taking Hydrocortisone and Fludrocortisone since 2002 with no problems it's just replacing what's not being made! I see my endocrinologist every 12 months as its managed well and my bloods are good.

All the best

Steve

[Seifert_09 in reply to StevenSims]

Thank you very much for the info !

[SongStream]

I agree with Steve. If untreated, it can be fatal. My brother, undiagnosed when he was 19, had an Addisonian crisis and almost died. Subsequently, I tested positive as well. We didn't know we had AMN until 20 years later when we had other symptoms.

Addison's is a manageable disease. It may take awhile to find the right dose for you. 36 years later and I am still modifying my dose because of the ACTH level.

Steve 2

[AussieBob]

it is critical that you get to an endocrinologist. More so than your Baclofen which is also a must.