My onset was about 7 months ago, I was diagnosed last month.

So far nothing is showing up on MRIs (it's been 5 months though) but I do need to walk with a cane.

Urinary retention is there, bad fatigue too.

I've been functioning thanks to baclofen.

I don't think I have cerebral involvement yet.

So, I'm sure most of you were concerned about this the most when you were diagnosed,

but what exactly are my chances of getting cerebral involvement,

and what is the severity I should expect?

I'm pretty sure it can differ people to people vastly, but it'd be nice if I could hear some pointers.

Kind of freaking out.

I feel bad for my partner the most.

I would not want him to have to take care of me when I go retarded.

13 Replies

  • also, what's everybody's thought on lorenzo's and mustard seed oil?

    it can't hurt though, no?

  • You've come to the right place, and I understand your brain. Better than you might think. I'm there.

    There are gobs of other questions. How is your walking?

    A link worth knowing:


  • my walking was okay while i was taking baclofen, but now i am tapering and it's pretty terrible! gonna go to physical therapy.

  • If you must go to two canes (assume you have no less than one), do it. I did.


  • I am a AMN guy 56 years old and I hate baclofen use for our illness. Our illness is neurological and baclofen is a nero blocker, not what we need. It will cause urinary retention problems, walking problems and much more. Yes it will help you sleep and with pain in your legs by blocking the nerve signal but this pill has no brain and it will block many other signals that you don't want blocked.

    Most AMN people will have some lesions on the brain and they are very seldom picked up by an MRI. What yours will do is unknown but I have seen a low fat diet and exercise do wonders. I have seen excess drinking and drug use destroy people with AMN also. I have also seen doctors medicate people with AMN to death also, they have nothing to treat the illness but they have many things that cover up the symptoms, like baclofen.

    The medical establishment has been fighting over Lorenzo's oil and Mustard seed oil for more years than I can count but in my opinion normal long change fatty acids if better than abnormal.

    People who have brain involvement are not retarded and many have partners who would find offense with that word.

    Hope this helps in some way

    John Halter

  • This is really interesting about baclofen. I have been taking it for a little over a year for the spasticity, but had not fully realized other consequences. On most days, I only take about 20mg a day. Less if I'm not out and about.

  • i take 60 a day :P

  • i am currently tapering baclofen and am going through HELL with withdrawals. walking also got way worse. gonna go to physical therapy.

  • nice info! thanks a lot.

    Now what is the correct way to consume mustard seed oil?

    I would prefer this method since it's way cheaper than lorenzo's.

    i walk with a cane, but i could even do without it if i try.

    it gets worse later in the day.

    it would be extremely difficult for me to be on a low fat diet... :P

    now could baclofen make this disease worse?

    I kind of rely on it currently, it works very well on me.

    elevated mood, way less tension/pain in my muscles.

  • As I know you are in NYC, there is a doctor I've seen who treats AMN patients in Patterson, NJ. She used to be at Bellevue in NY, but moved early this year - unfortunately! Anyway, she told me that oil is beneficial however one of her patients went overboard and gained too much weight! She takes canola oil by the spoonful several times a day, everyday! I don't know what the correct amount ought to be, but perhaps your doctor can tell you. However, based on what you stated above, you may need to proceed with caution!

    I have been taking baclofen for a little over a year. I take the smallest amount I can get away with as I would be too sleepy otherwise! Besides daily physical therapy exercises, I stretch several times a day especially my calves. Before the physical therapy, I was losing my balance in everything I did (including tai chi) and every bag I carried was too heavy. Since then, I've regained most of my balance and I am able to lift my bags again!

  • canola oil works too?! oh my i have no idea what to do. i make my dog carry my things. he's a registered service dog.

  • Is canola oil a safe oil to use? What is the best and what should you stay away from?

  • Sorry, I did not see your post until now. I wrote about the canola oil because the doctor I went to see told me that story of another patient. I have not tried it and do not intend on trying it. The doctor only said it worked for that patient for mobility but the patient also gained weight from taking too much. I believe the patient was taking it directly by the spoonful. This is all I know of it. I don't have any more info on safety, etc, so you should consult your physician.

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