33 with AMN - Introduction

[KennyInPA]

*No, I'm no Britney! Haha

I stumbled upon this great community tonight and just wanted to introduce myself. My name is Ken and I am 33 from central Pennsylvania, diagnosed with AMN last summer. Both of my older brothers both have AMN of varying varieties, which lead me to get tested. My initial MRI showed no brain activity, but the majority of initial symptoms were there. (Gait, sore and tingly legs..). My oldest brother has been seeing Dr.Eichler in Boston and I'm scheduled for a consultation next month. My doctors in PA seem to know very little about ALD/AMN, so looking forward to just talking to someone with more experience.

I've been through physical therapy and have since graduated and continue the exercises usually daily to keep my leg strength up. I have good and bad days, tripping and falling on perfectly level flooring. I wish I could feel my feet and the constant burning would go away. I'm sure you all can relate to that!

I look forward to reading about everyone's journey!

[DennyB]

Hi Ken. I'm Dennis, 60 year old from New Zealand. I have had symptoms of AMN for the last 25 years. I had to walk away from my joinery business, Christmas 6 years ago. I now have to use 2 canes to walk. I have very little feeling in my feet, yet they are very sensitive. I know that sounds dumb, but I'm sure you can relate to this. I've had Addison's disease since I was 13. I feel the Addison's is under control. I get frustrated with the AMN, but my idea is that you don't have to look very far to see someone worse off than yourself. I try to keep as active as possible. Wishing you all the best.

[Pcutsor in reply to DennyB]

Hi Ken, I'm Pat. 60 years also. got this at 30. Worked until 40 as aIndustrial black-smith. Wanted to leave the shop on my own 2 feet. Been lifting weights since 89 twice a week and bike ride once a week Stationary bike now. My advice to you younger guys is watch your bladder function. It will get worse as time goes by. I quit getting that feeling to pee and started leaking all the time. Put ballons on my pecker and wore a bag at night. If I could go back I would of started using caths way back. One of my Kidneys shrunk and the fuction is 44 percent. Screw all the fears and trying to be tough and do what you have too. Watch your creatinene carefully. Just a blood test. Luckly I don't have the addisons problem. this shit seems to affect everyone differently. Just my 2 cents worth. Pat . Calif.

[KennyInPA in reply to Pcutsor]

Hi Pat. It's interesting to see you've lived with it for 30 years and can give advice like this. My oldest brother who is now 39 struggled with the bladder issues and we told him to just give him ad get the Cath. He is now wheelchair bound and has no other choice and seems to be enjoying it better than the struggle as prior. It definitely does affect everyone different. My middle brother seems to have more cerebral issues with less of the common AMN issues. I question whether I would rather be crazy or be able to walk a straight line. That's a hard one to answer!

[Pcutsor in reply to KennyInPA]

My brother had the brain issues also but he wasn't crazy just not right .His legs started getting bad at 30. We lost him in 96. Had a bad seisure and we had to let him go. He was a tuff sucker though. Lost my sister in 80 at 16 years of age from a brain tumur not cancer. My poor Mom sure got screwed. I.m the oldest of 3 and the only on left. Wish they would find some thing to help us in her life time. Would love to see her face seein me like Im was.My Mom talked to the guy that heads up the ULF and he thinks there is something comming. Pat

[KennyInPA in reply to Pcutsor]

I hope so Pat! The thing that made my brother's case interesting is that they deemed him "mentally unstable" and he was able to get disability assistance immediately. So much he got a check for over $6k in backpay, in which at his mental state, he blew it all. It's not so much he is crazy, but has the mind of a 12 year old probably. I'm his venting brother as he always calls me just to vent and I gladly sit and listen to it!

I just found out today they are moving my oldest brother to a nursing home as he needs 24/7 care and something his fiancé and the family cannot provide for him. The rate he spiraled is unreal and very sad to watch as his youngest sibling.

I may also add that my uncle also had AMN, misdiagnosed as early Alzheimers. He passed away at 37. I just have to stay positive and being here tells me everyone is different and my story may not be the same as my relatives.

[Pcutsor in reply to KennyInPA]

I'm praying for us all. Keep the faith, Patrick

[KennyInPA in reply to DennyB]

Hi Dennis! I can definitely relate to that. I'm still able to get around fairly well, I just don't move as fast as I used to. I do at times get frustrated, but try to keep a positive attitude as it makes no sense beating yourself up over it. I do enjoy talking with others who share the struggles, helps a lot!

[wilburlois15]

Hi Ken. I am Angus and I live in the UK. I'm 40 and was diagnosed with AMN a couple of years ago but have had steadily-worsening symptoms since my late 20s. I try to keep active by walking on a daily basis but it is not elegant, sometimes painful if I fall and I burn through lots of pairs of trainers as I wear holes in them! Keep positive and good luck.

[KennyInPA in reply to wilburlois15]

Hi Angus! I can relate to the holes in the trainers, I have a few of those pairs. Most of the time it was pavement, and that isn't so pleasant as you probably are aware! I appreciate the words about positivity, it helps a lot.

[KennyInPA]

I wanted to stop in an give an update after my visit with Dr.Eichler this week. After speaking with his whole team, it is a breath of fresh air compared to what I get from my doctors close to home. After watching my oldest brother now deal with the horrid brain disease side of AMN, it's hard for me to not put my head in the sand and call it quits. They were very positive and reassured me not every case is the same if I'm proactive about it. I did my yearly MRI while there and it came back normal as before, which is what they were hoping for. Yeah so what my legs are burning and I stumble at times, good news such as that keeps you continuing and forgetting about the negativity. While it was a 6-7 hour drive, totally worth it if you are considering seeing a specialist.

Keep those feet moving!

Ken

[julie_]

Ken, it is always so reassuring to be able to speak to medical professionals who know what you're talking about! I've seen Dr Eichler and his staff a couple of times and I've had good experiences.

I agree - keep moving and stay proactive!

[KennyInPA]

My oldest brother lost his battle today with cerebral ALD. Every MRI, every doctor appointment, will be in his memory. I'm keeping my head out of that sand and moving on my proactive fight against this evil disease!

[easygoin1]

My deepest sympathies Ken!!!

[Aaron98]

I'm very sorry to hear this, Kenny. You and your family are in my prayers.

[Klorda]

Hi Ken, my name is Karen and I have been diagnosed with AMN as well. I'm 56 years old and have the constant neuropathy in my legs. Medications don't help. Fortunately, I love to work out and that makes me feel so much better. I hope I can continue. I have gait issues and always thought it was vertigo. I can trip over a perfectly flat floor too. I'm glad I'm not alone!

[Hillary in reply to Klorda]

Hi karen, I am a bereaved mum and also have AMN. I used to go to the gym and agree with you it helps lots. I'm 61 now and unable to go anymore due to deterioration, I also have a very good relationship with the floor when not using my wheelchair! I have the usual symptoms in the legs but also had surgery for other things. Thankfully the drugs I'm on work or I would be claiming the walls. It's good to have other people to talk to, who understand. Keep posting!

Hillary

[Klorda in reply to Hillary]

Do you always have to use your wheelchair?? That's what I'm scared of.

[Hillary in reply to Klorda]

I can only walk around the house and to my neighbors, but then my mum, also a carrier, could walk until she died at 87. Everyone is different so don't worry too much. I have other problems which have made walking more difficult when combined with AMN. Keep going to the gym and exercising as much as you can, I'm sure it helps lots.

[Klorda in reply to Hillary]

Thank you!

[jazziestjeff]

Hi Ken,

I have enjoyed your YouTube posts, and especially in the early days after my diagnosis of AMN, you really helped me deal with it, and get my head around what I am dealing with. Thanks so much for cheering us on, and making us laugh! Hope I can do that for others as well!

Jeff

[KennyInPA in reply to jazziestjeff]

That’s great to hear Jeff! Keep those feet movin!