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AMN Medication

DennyB
0 Recommendations

Hi to all.
I just found your group last night while surfing the net.
I am a 51 year old male who has had Addisons disease since I was 12 year old. In the last 10years I have been diagnosed with AMN. I are taking Hydrocortisone and Fluronef for the Addisons disease and Baclofen for the AMN. The baclofen doesn't realy seem to help with the stiffness to the legs. Was wondering if any of the members are trying a different medication that I could try and hopefully get better results.
I look forward to any replies.
Kind regards Dennis.

Explore topics in this discussion:

Lovastatin Elavil Ativan Physical therapy Baclofen Pain Neurontin Tegretol Valium

12 replies

britt_carrier

Hello Denny -

I am taking baclofen, neurontin, elavil for the pain. For spasms I take ativan and valium.

Let me know how you make out. This medication combination does not always take away the burning and numbness feeling but my legs are somewhat looser.

Warm wishes,
Brit

wenALD

I use a combination of drugs for my legs. I use Baclofen, Tegretol, and Neurontin. I tried lots of things before this combo was found to work.

twbuckner

Hi Dennis,
I am 47 with AMN. My symptoms are probably on the mild side for men my age, but it is still a lot to deal with.
I take only the hydrocortisone for the Addison's and extra vitamin D and calcium to fight any chance of bone loss - a side effect of the cortisone boost. My policy is to take as few medications as possible and will throw the hydrocortisone out as soon as the doctors tell me i don't need it (ok, not likely).
I have been on the Lorenzo's oil study at KKI for the past 2 years. The oil component of the study has been suspended for now, but we are still doing a modified diet and physical therapy. I highly recommend as much activity as possible. I am heading down to the coast right now to participate in 3 days of cycling.
Take care of yourself.
-ted

sjm

Hi Ted
It sounds like you are doing very well. Since KKI has suspended the oil, and I am not sure why is it about money, why don't you take the mustard seed oil and the red rice yeast as a statin? I am asking not sugesting.
I hope you have a nice weekend

britt_carrier

sjm -

What do you do with the red rice yeast? How much do you take and how?

I was taking the MSO but my liver functions were off so they had me stop.

sjm

Hi
I spoke to you personally a few times by email, I am the one from England. I have been in touch with other carriers through email and they have told me about red rice yeast, so I am not so sure how much to take but I will find out. Yesterday I met up with Janis Sherwood who is doing an awareness compaign across the US. She is visiting hosiptals and giving out info about ALD/AMN. If you look on her site which is great www.FightALD.org she has a page on different suppliments, that has info on red rice yeast. It is a natural statin and apparently has helpful effects rather like Lovastatin. I have heard.

britt_carrier

Okay, now I know who you are. Yes, I contacted Janis to find out when she would be in my area and if there is anything my family can do to help her. She responded to let me know when she would be in the area.
I will check out her site again.
Thanks!!

sjm

Hi
That would be good. She is doing a wonderful thing and she is very couragous.
I am still not sure how much of the red rice yeast. You can get it from any supermarket/health food store. Probably just the advised amount on the bottle. If I hear differently I will let you know.
Take care

britt_carrier

sjm -

I saw on another post that Jamie was taking the red rice yeast. I asked her if it did anything for her and how much to take, etc...

By the way, it's nice to hear from you!!

sjm

Yes, you too.
I heard about the red rice from another girl, I hasitate to write her name on here as I don't know how she signs off but when I hear from her I will let you know. You may know her I don't know.

My beautiful nephew passed away two weeks ago.

I hate this cruel nasty ALD

ErinNicole

Ted, What kind of modified diet are you on?

twbuckner

Hi Erin,
My current diet is no red meats, pork, eggs, nuts (except walnuts), or palm oil. Avoid butter, ice cream, and other heavy dairy creams. Limited overall fat intake based on personal anthropometric data. That's about it.
-ted

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