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ALD LIFE
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Women Carrier Symptoms!

Hi I'm 42 and I am a carrier of ALD. I'm starting to experience tingling and numbness in my fingers and toes. I also have notice unusual pain in my feet and extremely restlessness in my legs. Are there anyone else that may be able to share their progressions of the disease and what I am to expect with it. Thank you in advance.

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Hiya Hope, I’m 49, and female. I was diagnosed a carrier in my 20’s. About 10 years ago I had nerve conductions, and was told I had mild nerve damage in my legs. I have pretty bad back, leg & foot pain. I also tend to go off balance at times. I’m sure people think I’m drunk when that happens hahaha. I walk with a cane. I have sudden urgency with my bladder and bowel, and I do tend to wake a few times in the night to use the bathroom, but that could also be my age. I had really bad RLS, so bad that I would kick out. I didn’t even know when it would happen, a leg would just kick, always at rest time. I now take Amitriptyline and Co-Codemal for this, and the kicking has stopped. I find mixing the two drugs together works, as Amitriptyline on its own didn’t work. Someone on some site gave me that advice. I still get the odd night where my legs don’t feel comfortable, but it’s rare. Fatigue is a nightmare, I’m tired all the time. I should say, I also suffer with Rheumatoid Arthritis, so I do wonder if some symptoms crossover. Pain, fatigue, balance, RLS and incontinence seems to be the symptoms for women. To be honest, I think the medics are still learning themselves about women with symptoms. I hope I’ve helped x

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Thank you so much for your respond. I truly appreciate it. I'm very scared of this disease seeing as how it damaged my son. Thank you again.

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That’s totally understandable Hope. Try not to worry, I know that’s easier said than done. Someone’s always on here to answer your questions. You’re not alone. Take care x

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Hi

I just read through your symptons & it was like reading about myself !!! I take gabapentin (2....3 times a day). Thankfully my bowels are ok but take medication for bladder which really helps

I always say I wake up tired even after 7-8 sleep....x

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This symptons are exactly like mine the doctor gave me rivotril for my legs it's a medicine for epilepsey in children I don't think it works that well as my husband says my legs still kick out sometimes

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Hi Jill, if you only kick now and again, I’d say stick with the drug you’ve been given. If it gets any worse, maybe it’s time to try something else x

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Hi Hope

I am Chris and I am the admin person for AMN Easier. This is the sister - site at healthunlocked.com/amneasier and is specifically for adults who have the AMN form of the disease. If you register on that site as well and post your story again, you will find many ladies around your own age who are dealing successfully with the disease. They will be very pleased to assist you.

I do wish you every good thing in dealing with AMN. But you can still get on with your life and make AMN just something to be managed.

Very best wishes

Chris (COwithAMN)

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Thank you so much for the well wishes and I'm trying to deal with along sude my 11yr. Old son having tge disease as well (&very aggressively i might add).

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Hi Please get in touch with me Karen@aldlife.org this group is also very supportive and can offer some really good advice, thank you to all who have replied.

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