Any help from a friend

[fdonaire]

I've AMN disease detected in 2013 and i'm 61 years old, but i 've Addson's disease since 1980 probably it was AMN since that time, i'm suffering a lot with the symptoms i almost lost the capacity to walk, waking using canadian crutches with big difficult and the problemns with intestine and urine are terrible i need to leave with diapers and even i lost urine. The fadigue are so strong and a lot of unwell. I know that doesn't have cure, but i need some help to releaf the symptoms.

I have very oriented food usage but no orientarion about the required for the disease, any orientation from any friend will be gratefull

[DennyB]

I'm 63 tomorrow and have had Addison's since I was 13. I've had symptoms of AMN for approx 25 years. My Addison's has not been a major problem for me. I've only been into hospital with a crisis once in all that time. There have been other times that I probably should have gone to hospital but didn't really know what was wrong with me. I now need 2 canes to walk. The only other problem I have is severe pain in the lower back.

[COwithAMN Administrator AMN EASIER Volunteer]

Hello fdonaire

Well done having found us and for getting in touch. The first step often in dealing with AMN is finding others to talk to, and on AMN Easier you will find plenty of support.

Your symptoms sound fairly typical.

Are you getting help locally in Brazil? You don't mention any medications you may be taking - please tell us.

The problems with the bladder are common and there are ways of helping with that - e.g. self-catheterisation - that you can do. Likewise some help with bowel. You don't have to rely only on diapers.

You are doing a lot for yourself - that's good. Keeping moving on your crutches is important. Try to stretch at least once a day.

If you would find it easier to write in your language (Portuguese?) we can translate it for you and re-post it.

Best wishes

Chris

[fdonaire in reply to COwithAMN]

Chris

Thank you for your attemption, i'm taking corticoids, bacoflen, mantidan, and oxalato de escitalopram and doing a lot of physiotherapy, this medicine mn102 is in study ? What do you think about that ?

[bluejadedwho in reply to fdonaire]

I’m wondering why you’re taking mantidan? It’s normally prescribed in Parkinson’s disease.

[monkeybus in reply to bluejadedwho]

Amantadine. It's prescribed for a few things. Used to be standard issue in China for influenza.

It's a so-so stimulant. I've taken it. Plenty of MS patients are prescribed it for fatigue. Just ask for it, you'll get it.

There was a post recently about Cabergoline - a hardcore Parkinson's drug.

[COwithAMN Administrator AMN EASIER Volunteer in reply to fdonaire]

Fdonaire

I am not the right person to ask about Min102. I am not on this test.

I hope the validated results will be out soon.

I always warn AMN-ers not to invest too much hope in any new drug. I have been on trials before that came to nothing.

We can only wait and see.

A number of us have experience in dealing with bladder problems, so if that would be useful please ask.

Chris

[mtpallet]

I fought urine loss for years then finally started using male external catheterS. With leg bag during day and bed bag at night. No longer am the guy that knows where every bathroom in town is located!! Can go hours without bathroom. Don’t fight walking too long. What is the point. That you’re a tough guy. It is not a give up decision. Hang in there. I had symptoms of Addison’s for years but nothing to point to Addison’s. Till I had crisis.