Hello. First Post.

[hvaan]

Just registered on this site, I was given my genetic test result last week and the nurologist then confirmed I had AMN. VLCFA blood test was earlier, high levels.

And now I don't know what to do. I got some Baclofen from my GP a few months ago when he informed me my limping was in fact spasticity. Shock.

I hunted about on the Net and found plenty of information on my disease. Quite a few forums and a lot of articles. But not a lot to do really. Treat the symptoms, have MRIs, hope for the best.

Is this right? I mean is there anything I can do? I keep reading Lorenso oil, Mustard oil. Does this help?

I also read Modafinil. Fatiue, I have this. Always tired. Is it OK to take?

And what is Ampyra? I read for spasticity. I I have Baclofen, which is better? Other drugs like Soma and Gabapentin. Seems a lot.

Can I ask what everyone does for AMN? I will see my doctor in next week too.

Sorry for this English. I use Google to translate.

[JasonHarnum]

Your google translate into English is better than my English is my first language. 😊 Welcome. Where do you live? Think you will find that everyone is different as to what they do and work with having AMN. MonkeyBus for sure will be the most entertaining

[Aaron98]

Hello hvaan, and welcome to the forum! I'm very sorry to hear about your diagnosis, but I'm glad you have found this site. It can be very helpful.

Sadly, treating the symptoms of AMN is often all we can do. None of the medications that you mentioned were developed specifically for AMN, and all have varying degrees of effectiveness. Most have not been effective for me. Gabapentin and baclofen were not helpful at all, and I got up to very high dosages of both.

Modafinil also was not helpful for me. I did not notice any improvements to energy or mental alertness after taking it. That being said, others have had great results with that drug, and I know some on this forum swear by it. You will likely just need to see what works for you. If you have specific questions about any medications, we would be happy to help.

As for Lorenzo's oil, I am not an expert of this topic, but from what I have read, it seems that it was found to be ineffective at reducing build-up of VLCFAs, and is not currently recommended for men with AMN. There are currently no approved disease-modifying medications for AMN, but I believe that a few are in the testing phases. I signed up for a Minoryx drug trial that is supposed to begin sometime this summer, but I have not heard whether I am approved for it, yet.

Do you have Addison's Disease, or adrenal insufficiency, in addition to AMN? If so, hopefully you have a good endocrinologist who is knowledgeable about this.

If you have any other questions, please reach out. Welcome again.

[monkeybus]

Hello hvaan ,

Just seen your post, I hope you are hanging in there.

I bought some Mustard seed oil a few years ago, though I never took any. A lot of people swear by it though.

Ampyra certainly works for spasticity, though unless you have excellent insurance it is hard to get. It is expensive stuff.

4-Aminopyridine is the same chemical, cheaper. Some say it's not as good as Ampyra, but I disagree.

I am a big fan of ALCAR, very nice, gentle lift, really takes the edge off fatigue.

It is cheap, tastes awful -

purebulk.com/products/alcar...

4-Aminopyridine and Modafinil, I have bought and trust this lot -

mod4alll.com

I expect you've been to see numerous doctors by now. Where do you live? Were you prescribed anything. Stay in touch, I am sure we'd all like to know more.

Later.