AMN and MS?

[lightnin77]

Anyone else ever been tested for MS after a positive AMN diagnosis? In a 50 female diagnosed with AMN in 2006. Just curious there are so many additional treatments and meds for MS that you cant get unless you have MS (damb insurance companies) just wondering if I should ask my neurologist for additional testing to see if I have a dual diagnosis. Thoughts?

[monkeybus]

Having AMN doesn't preclude MS. If you are concerned, you should get yourself tested.

Though, you should already have had the blood test, lumbar puncture and MRI. Any decent neurologist would have rued out other diseases.

There are plenty of drugs frequesntly prescribed for MS that aren't handed out for AMN. Methylphenedate, Modafinil, Natalizumub spring to mind.

myelin.org mentions Natalizumub as possibly being of help to us. I tried to get it prescribed. No dice.

[lightnin77 in reply to monkeybus]

I was diagnosed with amn by Kennedy Kreiger at John Hopkins. But I'll talk to my current neurologist thank you

[monkeybus in reply to lightnin77]

So I read, AMN is (was) commonly misdiagnosed as MS.

MS is the obvious conclusion, it is much more common. You'd think they'd rule out MS before testing for AMN. But I'm guessing now.

The symptoms are pretty much the same, though MS has "treatments", we just have repurposed drugs.

Take care.

[lightnin77 in reply to monkeybus]

I knew I was a carrier my brother died in 84 from ALD. I have elevated FLCFA so AMN it is

[Hidden]

Hi, sometimes MS is a misdiagnosis when actually the person has AMN, I am assuming you have had genetic testing to confirm your diagnosis of AMN? It is not impossible for you to have a dual diagnosis although I would have thougth extremely unlikely but you would need to discuss this with your neurologist. There are some treatments for MS but unfortunately they may not work for AMN as although the symptoms are very similar the mechanics of the diseases are quite different. If I can be of any further help please contact me [e-mail] I am the Support Services manager of the charity ALD Life. take care Karen

[lightnin77 in reply to Hidden]

Thank you I'll email soon

[deengo]

I have a dual diagnosis of AMN and HNPP a form of CMT. I was diagnosed with hereditary neuropathy with liability to pressure palsy (HNPP). 2 years later after having more symptoms that weren't related to HNPP and much testing I was diagnosed with AMN also. CMT/HNPP falls under the MDA umbrella so I have benefited a little. 5he MDA sees me for HNPP but at the same time the neurologist will see how my AMN is doing. I was also able to get Ampyra prescribed which i dont think would have been covered if i only had AMN.

[Aaron98 in reply to deengo]

You have a fascinating story, Dean. How do you like the Ampyra? I think you told me you had some videos of you walking without it and with it - is that right?

[monkeybus in reply to Aaron98]

Aaron98 , I certainly have vids. I am digging them all out now to upload to YouTube. Been promising to do this for years now.

Spasms, spasticity, walking after TENS, after stretching, after 4-AP, after 4-AP-3-MeOH.

I actually took my iPad to see my neurologist a while back. Tried to show him. He coldnt have been less interested. A true man of science.

[Aaron98 in reply to monkeybus]

Monkeybus, did you get a chance to post those videos yet? No rush, just want to make sure this doesn't get forgotten, as there have been a lot of posts recently. Thanks again!

[monkeybus in reply to Aaron98]

Haven't forgotten. I'll be home in just over a week, I'll dig out my camera and shoot the vids.

[SongStream in reply to monkeybus]

How timely to see your post! Today when I saw the neurologist for the Min-102 study, she suggested that I video what I believe to be myoclonus but perhaps might be spasms (I'm so confused) to show my own neurologist which is a great idea.

Gee, I'm having an AMN day. : )

[monkeybus in reply to deengo]

A lot of acronyms in your reply deengo . Must be serious.

We should all do a list of our secondary complications. I have Varix disease.