New Here. Elevated VLCFA, Possible AMN. California Surfer:)

New Here. Elevated VLCFA, Possible AMN. California Surfer:)

Hi Everyone! I'm new here. My name is Sam and I'm a 27 year old surfer from Southern California. Anyways, my (possible) AMN story starts about 8 years ago, when I started to develop a whole slew of odd symptoms: my left side felt strange, stiffer walk, night sweats, inability to recover from workouts or stress, dizziness upon rising, insomnia, heat/humidity intolerance, depression/anxiety, mood swings, brain fog, extreme fatigue. I also have vision problems (shaky world, and a fourth nerve palsy apparently). This seems to come in waves, which is originally why I thought it was relapsing-remitting MS. Long-story short, it is not, and a little over 2 months ago, I developed a limp which has turned into episodes of very abnormal gait (brain and legs aren't on same page) and an amazing doctor had the brilliant idea to run the VLCFA blood test. Sure enough, it came back abnormal and this prompted her to order the genetic test. So here I am waiting for this test. I was just wondering if anyone had all of the adrenal symptoms first and then it progressed to more neurological? My MRI shows 4 lesions on the frontal lobe. Does anyone have anything similar? I hope all of you the best and I look forward to connecting.

Cheers,

Sam

13 Replies

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  • Hi Sam, and welcome to the club which none of us asked to join.

    We are a disparate group from around the world. I am here in (today) rainy London (U.K.). AMN symptoms can be very varied as you may have gathered already, so yours are not necessarily unusual. The gait problems are very common.

    You will find lots of support here. I also met a chap about your age a few years ago who was also from southern California so I will try and see if he is willing to perhaps meet you. It's always helpful to meet others dealing with AMN in person.

    You have a great attitude which helps a lot when you have this disease.

    All the best

    Chris (AMN Easier Admin)

  • Hi Chris,

    Thank you for the warm welcome. Yes, that would be great if you want to make that connection with your friend here. I think that's the most difficult part about this: talking to someone who understands. Other than that, I just continue to adapt to whatever this thing throws at me, but I'm not going to let it beat me. I can't do the intense exercise I used to able to do, but I find yoga and swimming to really help with the spasticity and even gait!

    I have one question and you can be honest: I was planning to go to Physical Therapy school. That is my heart and passion. Do you think a stressful 3 years of schooling is a bad decision? I just don't want to exacerbate AMN or develop cerebral stuff. I'm kind of stuck at the moment and doctors aren't really giving me straight answers. They do say that even if I make it through school, the profession itself will be tough with all of the AMN symptoms.

    Thank you again Chris,

    Sam :)

  • Hi Sam

    Well, Aaron has jumped in before me, and thank you Aaron very much for such insightful and practical comments. You have ably shown what a great bunch of AMN-ers there are on this forum.

    I agree with his comments concerning whether you should embark on the Physical Therapy programme. It’s a very personal decision. He is absolutely right I believe that doing this would not exacerbate AMN or cause it to worsen more quickly. He alludes correctly that there is some evidence that head traumas can worsen AMN or cause progression to cerebral ALD.

    The question I always like to ask myself when I embark on any new venture is “what’s the worse that could happen?” (I even ask it when travelling when I am worried about my bowels misbehavin’ !). So for you, if you started and then say had to give up after a year or two, how would you feel? Maybe you would have learnt enough to be able to work in this area on some other basis - say as an assistant or volunteer? You point out that Physical Therapy is your passion and having something to devote yourself to when you have something like AMN is worth a lot. It’s easy for any one of us to become so focussed on dealing with AMN that we slowly stop participating in the world outside. A bad idea, I believe.

    On the issue of shooting hoops and staying active, I agree again with Aaron. Do as much as you can. What I found with AMN is that slowly the spasticity takes over, and what has helped me has been in devising a morning stretching routine which I do every morning after showering. it takes about 30 mins and I can do it on the floor at home. All the big leg muscles get stretched, and the back; do them slowly, 3 times per stretch. I am sure you can devise the stretches that will help you (it’s your speciality), but if you need suggestions, pease ask.

    Once again, stay positive and keep in touch.

    Chris

  • Hi Sam, and welcome to the forum. This forum is a wonderful resource, and I have made a few close relationships with members. Communicating with someone who knows what you are going through is priceless.

    I'm on the west side of the country, as well, in the Seattle/Tacoma area. Your experience sounds similar to mine in many ways. I also began experiencing symptoms of AMN in my very early twenties, and I was diagnosed two years ago at the age of 29.

    To answer your question, I believe the adrenal and neurological symptoms came in around the same time for me, and various symptoms have developed at different rates. My earliest symptoms were urinary issues, leg spasms, balance problems, and extreme fatigue. I didn't really begin experiencing significant brain fog, neuropathic pain, and sleeping difficulties until a couple years ago, but they've definitely gotten worse, even in the last year. I have minor lesions on my brain (termed "classic AMN" by the specialists), with no signs of what would be termed adult cerebral ALD involvement. If you would like the specific details of my last MRI, please send me a personal message. As an aside, have you been diagnosed with adrenal insufficiency? I didn't see a mention of that in your post.

    I used to be involved in competitive and recreational athletics, as it sounds you have. Giving a lot of that up was somewhat difficult for me, but it ultimately comes down to reestablishing expectations for your life. I used to love playing basketball, and even though I cannot run anymore (my balance won't allow it), I try to get out a couple times a week just to shoot hoops. It's good exercise for my arms, and allows me to be around the game I still love. Someday I hope to join a wheelchair basketball league, if/when I progress to that point. Try to continue to stay active, Sam, however that is most enjoyable for you.

    Regarding your question about going back to school for three years to study physical therapy, that is a very personal decision. If it was me, I don't feel that I could handle that. I experience significant mental and physical fatigue on an almost daily basis, and I just could not keep up with the demands of rigorous schooling and study, particularly in such a hands-on field. I highly doubt that it would exacerbate your AMN or cause you to develop adult cerebral ALD (there is no progression predictor available, apart from head injury), but your symptoms would almost certainly affect your ability to perform the job. Many of us with AMN, including myself, are currently in or have had physical therapy ourselves due to our balance and mobility issues. Once again, this is a personal decision, and you know better than anyone what you feel you are capable of.

    I am glad that you found this forum, and I hope that it will be a help to you. Please do not hesitate to ask any questions you might have. Again, welcome.

    Aaron

  • Wow Aaron, thank you for the thoughtful introduction! My family is originally from Bellevue area. If you don't mind me asking, what brought you to a diganosis? I was diagnosed with dysautonomia, via tilt-table-test, and I was told this is likely due to adrenal insufficiency: test results are coming back sometime next week.

    I've recently had a lot of problems with my feet: numbness, stiff, etc. Do you get this as well? My walking is very temperamental. I feel like a flickering light-bulb...sometimes it's okay and just a minor limp and other times its holding on to counter-tops and walls. But all of the gait stuff is 2 months new.

    That's good you are still getting out and moving/shooting hoops! Keep doing what you love. I guess we just need to keep a positive attitude and just adapt to what AMN throws at us. Thank you again for your reply, and please don't hesitate to reach out if you have any questions for me.

    Cheers,

    Sam

  • Hi Sam,

    I am familiar with the Bellevue area, indeed. There's a great Taiwanese restaurant up there called Facing East that I can highly recommend, if you're ever back in the area. Do you ever get up to these parts anymore?

    I don't mind you asking about my diagnosis at all. You'll find that most people on this forum are very open and honest about their disease and its effects. People with chronic illness generally don't have time for anything but complete honesty, and any embarrassment that I felt over my symptoms left me long ago.

    I was diagnosed fairly easily, as I have a pretty extensive family history of ALD/AMN. My grandfather and great-uncle both had AMN, and my mother, one of my sisters, two of my aunts, and one of my first cousins-once removed are all carriers. A second cousin I unfortunately never met died from ALD as a boy. I have two male cousins in their mid-twenties who both have the gene defect. One has Addison's disease only, and the other is asymptomatic, thus far. I was initially diagnosed with Addison's disease, and then the confirmation for AMN as a result of the VLCFA test came a few weeks later. I've never had genetic testing performed on me.

    I have many problems with my feet. Stiffness, numbness, pins-and-needles, stabbing pain, burning pain, foot and ankle swelling, you name it. All of this is very common for men with Addison's and AMN. There are good days and bad days. I grab counters and "wall surf" constantly, and have a cane that I use occasionally. Have you had any falls? I try to be much more conscious of my foot placement than I used to be, and have avoided any bad falls for quite a while. I still stumble regularly.

    Please remain in contact with us, especially as you adjust to this new challenge you have to deal with. Let me know if you have any questions at all. I am able to manage some of my symptoms better due to advice from other AMN-ers on this forum. I admire your positive attitude.

    Cheers,

    Aaron

  • Aaron,

    I guess that's been the tricky part with diagnosis..no known family history. However, my mom was diagnosed with MS, but she's not too sure that's it because it's fairly mild. My Grandpa had a pretty aggressive form of Parkinson's, so I'm wondering if he was either misdiagnosed OR Parkinsonism is somehow related, genetically, to ALD.

    Yes, unfortunately, I have fallen numerous times. Either from just leg collapse or sometimes my toe catches and I faceplant haha (we have to find the humor in this somehow). My wrists, although not broken, are starting to take a beating. How has AMN affected your job? That is my biggest fear.

    Thank you again for your replies,

    Sam

  • Hi Sam,

    I'm happy to answer your question about my work and how AMN has affected it, but I would prefer to do that in a private message. Please shoot me a message with any other questions you might have, and I promise to answer promptly.

    Cheers,

    Aaron

  • Hi again Sam

    I wanted to get back to you again quickly because I had a reply from the guy with AMN who also lives in S. California. He is in San Diego. My wife and I met him and his partner when they were over in London in 2014 en route for a snow-boarding holiday in Austria. So I guess you may have lots to talk about!

    He says I should give you his details and he would be very pleased to meet up. Rather than post his details here which I'd rather not do, I am sending you a private message with the details. Just click under your name and select Messages. Also, the little bell symbol should turn red when there is a message.

    All the best

    Chris

  • Thank you Chris!!

    I will get in touch with him.

  • Given the possible negative implications of an MRI showing cerebral involvement, it might make sense to consult with Dr. Gerald Raymond at the University of Minnesota- neurology.umn.edu/profile_r.... I believe that he is acknowledged as the expert for AMN/ALD in the United States.

  • Many AMNers, including myself, have varying levels of brain involvement that is not indicative of adult cerebral ALD. I would certainly recommend sending your MRI discs to an ALD/AMN expert for correct interpretation.

  • My AMN expert says "These lesions are probably typical of AMN, I think this one is also a lesion as well, or is it? Let's keep an eye on this."

    Booking a fresh MRI next week, not expecting any cerebral changes. If I has any serious cerebral involvement I should think I'd know about it. Wouldn't need an MRI to tell me so.

    That said, I don't know how quickly lesions generally grow.

    Top of my list is not falling over and smacking my head, which is easier said than done.

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