Newly diagnosed

I am so glad I found this site. I have recently been diagnosed with Adrenomyeloneuropathy. I am 35, have spasticity, numbness in both feet, pins and needles, and I am so tired.

Yesterday I spent the entire day reading through the posts on this site. I live in Italy, don't speak Italian (I teach English), and I have to fly to England for treatment. My girlfriend suggested I try Modafinil so I bought some from that mod4all site. I walk quite well but I am very interested in Ampyra. Is anyone here prescribed it? It looks expensive.

Does anyone here take vitamins? I have been reading about the antioxidant treatment. Does it work? Been reading about TUDCA as well.

Too many questions. Can anyone suggestes any other sites I can visit?

Thank you all very much.

7 Replies

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  • Have you tried our ALD LIFE site?

  • Hello Russianbob, welcome to our site. I have had AMN for more than 30 years so perhaps I represent those of us who manage to have a good life with this disease while dealing with its worse effects. I have found that it is important to keep stretching and moving. The leg spasticity will slowly get worse but the more you can stretch muscles every day the better you will feel.

    Many people on this site take variety of medications many of which would not be prescribed or paid for here in the UK. I can't speak for the safety or efficacy of them, although some people swear by them, unfortunately you have make your own assessment. I will say that in my experience over 30 years there are no miracle therapies unfortunately.

    The tiredness many be down to the possibility of AMN affecting your adrenal glands - you don't say if you have any adrenal symptoms.

    I live in London so if you fly to England for treatment and come to London I could meet you for a chat. I'd be glad to try and help.

    Very best wishes

    Chris (Site Administrator)

  • Welcome, russianbob. Your symptoms sound very similar to mine. The fatigue is what I've really been struggling with recently. I got a prescription for Modafinil yesterday and will take one for the first time tomorrow morning, to see if it helps. Please let us know how it works for you when you receive your shipment.

    Unfortunately, I cannot answer many of your other questions. This forum is very helpful, though, and I am sure others can chime in. Again, welcome!

  • Ciao Russianbob. I'm a female affected/symptomatic. Mirroring your situation I'm Italian and living in the UK. I imagine you are entitled to the Italian NHS, saying this as my family in Italy is well looked after at the Istituto Neurologico Carlo Besta in Milan. Dr Ettore Salsano, the consultant specialised in ALD/AMN is young and perfectly fluent in English. If I were you I'd give it a go, save on the journeys to the UK and get prescriptions as well. Buona fortuna!

  • Hi Russianbob! I am a 39 year old male with problems walking: spasticity, balance, etc and the usual bladder issues. No problems with fatigue though. I have been taking TUDCA for a month 500mg per day and nothing to report so far outside my usual cycle of ups and downs, but it is early days yet. My one piece of advice is to get out and get walking about. No matter how difficult it is, or in my case, how embarrassed I felt, I feel an awful lot better for the exercise. Ultimately, using the muscles is the best way to keep the nerves in anything like good condition. Good luck!

  • Russianbob,

    Like you, I have pain (burning) in the soles of my feet which is widely reported with AMN carriers and some males. I take Gabapentin for the pain. As for Ampyra, which is the expensive brand name for 4-AP and is time released, I go to a compound pharmacy for 4-AP which costs $71 dollars and can be bought 50% cheaper online. I feel it has helped me have more stamina and walking endurance which is evident when I use a treadmill and when I go out for walks.

    As for other websites for our community try:

    inspire.com. (search for AMN)

    aldconnect.org (this was mentioned earlier and you can also view educational videos, clinical trials, participate in AMN teleconference calls, one of which was held last Monday. ALD Connect also has additional videos on Youtube which you can find by search).

    You didn't mention your age but I am guessing you are in your 20's to early 30's since you have no difficulty walking. Fatigue is also a chronic complaint of mine and others. I'm beginning to realize that standing for a length of time and the spasticity are contributing factors compounded by Addison's.

    Glad you're here and joined the community. We all learn and support each other.

  • russianbob, did you get started on any meds/supplements from this thread?

    I received some 4-AP-3-MeOH and Modafinil from mod4all on Friday.

    The more I take, the more I like.

    So many different people on this board, we all seem to have our own preferred meds. some prefer zero meds.

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