Newly diagnosed

[A7x1823eb]

Hi guys I have been diagnosed with AMN about a month. I find myself stuck in a bit of a hole. I was diagnosed with Addisons for 3 years until they did bloods for VLCFA and genetic testing which confirmed my AMN diagnosis. I have never experienced any sort of depression/mental health issues before but recently i have been struggling to motivate myself.Any advice?

[tieaknot]

Hi there and welcome. This isn’t a club you want to join here but you will find a lot of support and some really great people, all walking (or limping or rolling) their own journeys with this. It is a rough diagnosis to wrap one’s head around and there will likely be many ups and downs so be kind and patient with yourself. I don’t have much advice right now but I’m sure others will be by soon to share. I just wanted to make sure you got a proper welcome.

[Coslet]

I went 6 years seeking a diagnosis. AMN diagnosis came before the Addison’s diagnosis. Although it was a kick to the gut, finally getting answers provided some peace and a direction. I’m the healthiest I’ve ever been since being diagnosed with Addison’s and starting treatment. Addison’s has robbed me of so much throughout my life. I’m blessed to still be alive to get a AMN diagnosis. Finally getting treatment changed my life overnight. As far as the AMN goes, if you are not currently experiencing a lot of the symptoms and even if you are it’s time to get a plan. Now is the time find out how to keep yourself as healthy as possible and mobile as possible. I firmly believe treatments and possibly a cure are coming. Look at your diet and physical activities. Look to maximize what you can do without endangering yourself. You are your best advocate. No one will advocate more for you than you. You can do this. Life is hard for everyone in some shape, form, or fashion. Someone always has it worse than you. Stay humble and grateful. A grateful heart will get you further than a bitter heart. We’re all dying. Get to living. You’re not alone.

[mariagno]

I was diagnosed in 1995. Beyond a punch in the gut. There was nothing back then. I searched the early internet and found Chris Ogden. He gave the early support that has blossomed into this group. Thank you, Chris.

My deep funk turned to depression that I dealt with for a few years. I got some medication, support from my wife and kids. I changed from looking for a cure and just found ways to improve my symptoms

The overcoming my symptoms opened the door for doctors to over medicate . Prescribing stuff that made me tired and mentally foggy. I was hurting myself by overeating and separating myself from people, I had reached almost 300 pounds

In 2015, I cut back the medication and started to workout. I started to eat more healthy and started seeing old friends again

My progression over the last 28 years went like this. A few years with a cane, to a walker, and arm crutches. I broke ankles 3 times, a hip, and a vertebrae. All required surgery and rehab.

My vanity would not let me accept a wheelchair. My doctor told me the bone repair surgery and risk of a head injury convinced me to get a wheelchair.

Today, I workout for 1-2 hours daily using a home tonal system, a NuStep, and the pool. I have dropped 50 pounds and put on muscle mass. I eat better but not crazy. Drinking is a beer a night .

I turned 60 last year and am in better shape than I was at 40. I use a manual wheelchair only. I kayak, urban hike, and stay active.

The point of all of this. They don’t tell you how to deal with the diagnosis.

I will

1) you must sustain a positive attitude.

2) you must accept there is no cure today and your results will be different from others

3) you must have a support team (family, friends, doctors) that you are willing to share how you are doing, that you may need help from time to time, and you are grateful for every day you are still breathing

4) staying or getting in shape now will be very important for your mobility, your health, and your mental strength. Find a plan, your future will be much better

5) don’t spend hours searching the internet

6) do use information to educate your doctors on possible courses of treating symptoms. Most doctors, including neurologists, have not heard or seen anybody with AMN. Become a partner for your health ask questions. Keep all your doctors informed of what the other doctors are doing and prescribed

7)don’t let vanity and personal pride to get in the way of tools to improve your daily life like canes, wheelchair, adult diapers, etc. staying active and engaged with people is very important .

8)if you have a significant other, share what is going on. Discuss today and tomorrow things. Share it all. I am closer to my wife today than 34 years ago.

9) plan future needs when buying a house or doing remodeling.

10) throw away the ADA handbook. It is generic for people with a foot injury to a quadriplegic. You are an individual. You need things tailored to you

11) enjoy what you have today. There will always be people better off and far worse off.

Lean on anyone you can, have hope, use religion if you partake, and don’t let hurdles get in the way

We bought a pair of jet skis last fall. My wife was worried .I would get hurt and not be able to get on it. The guy who builds docks and lifts merely asked “What do I need to build so you can get on it. I know you want to tear it up” Two opinions but completely different attitudes

Finally, an old man once told me “every day I wake up breathing is a good day and the day I don’t will be great because I moved on to a better place”

Completely changed my life

Best of luck for you.

[A7x1823eb]

Hi guys!

Thanks for the input. Its really appreciated. Its comforting knowing this forum exists because AMN can be a scary place. Each day is getting easier and I will take everything on board. Positivity ✌️

[alsrgnt in reply to A7x1823eb]

Hi there! Amazing thoughts and guidance from all here. I am a highly affected female and am sending you all the positive vibes. Nothing has made me more mentally strong than having this diagnosis. Truly. I am grateful to be a disabled person as it has provided me with grit, strength (physical and mental), and the ability to advocate for myself and never take crap. Having something rare like this is at first extremely isolating but it will show you quickly how to dig within yourself, push forward, and also see humor in everything. As others have stated here, I’m in the best shape of my life post diagnosis. Gym (6) days a week for me and moving your body and, no matter how it look to others, is the best thing you can do. Just life everyone else has said: you’ve got this. Everything you need is already in you, just have to dig for it.

[DennyB]

Like you said AMN can be very scary. I'm 65 and have had Addisons since I was 13. I found out about 30 years ago that I had AMN as a nephew had been diagnosed with it and the whole family got tested. It was about 25 years ago that I had the first symptoms of it. It was just a small stammer in my legs. I now need 2 canes to walk. I also was to proud to use a cane to begin with. You just have to get over that and use whatever assistance you need. I was very impressed with what Mariagna said. There was a lot of very sensible advice in his message. The biggest advice I can give you is to get your specialist to organize regular brain MRI done. I get brassed off with my walking but you don't have to look very far to see someone worse off. Wishing you all the best from me here in New Zealand.