AMN EASIER
885 members572 posts

Diagnose

It took 2 and a half years to diagnose. I had a constant headache. At one point I was completely numb. I was dizzy and light headed. Iregular heart beat .

No one believed me until I forced a genetic test. When that came through I started steroids. With in days I felt better. It took 6 months to feel normal. Now I feel better

I don't have feelings or emotions. Life is pretty empty. My memory is good. I have a couple of lesions but no other problems other than urinate every half hour. Thanks for lessoning.

12 Replies
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This all sounds par for the course. Very similar to my experience.

Why are you taking steroids, though?

What reason did your doctor give?

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Adrenal insufficiency about 10mg of pednisone day and fludrocortisone 1 mg a day.

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Hi bxd11, I haven't heard of anyone taking Prednisone. I could be wrong, but I think you need to query that, as you should be on Hydrocortisone. My son was originally given Hydrocortisone, and then had to stay in another hospital which was miles away from home, as he was on the trial for Lorenzos Oil. When he left they gave me Prednisone, I queried it, but they said it was correct, so I started giving him the med. I then called the consultant he saw locally, only to ask if I had to double the dosage on the new med when he was ill. He told me to stop it immediately, and go and pick up some Hydrocortisone. My son then started to attend Great Ormond Street Hospital, and they agreed Hydrocortisone was the steroid he needed to be taking. He's 30 now, and still remains on that drug. My nephew is also on Hydrocortisone.

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Prednisone has a longer half life. That is why they give it to me. It's my savior. Good luck

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And yes I double it when sick.

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Prednisone usually gets used for people with severe pain. Hydrocortisone works as a replacement, for all the cortisone that your adrenals are not making. I really would stress you get a second opinion.

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bxd11

Were you diagnosed as having adrenal insufficiency? You had hormone tests?

Also, which country are you in?

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Yes I'm in USA.

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And did you go to a neurologist? Or a regular doctor?

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Neurologist and endocrinologist.

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It's all good, then.

But like has been said, a second opinion cannot hurt.

I've seen five neurologists so far. Took a long time to find a decent one.

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Yes

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