AMN carrier female : Hi Olivia I have AMN my legs... - AMN EASIER

AMN EASIER

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AMN carrier female

spalding profile image

Hi Olivia I have AMN my legs are a lot worse now and my arms and for the last few days my head feels like it’s burning and my ears is this connected to AMN

12 Replies

Hello, I'm sorry to hear your symptoms have got worse. Weakness in the arms and legs, as well as spasticity/stiffness/pain in the legs are common symptoms for women with AMN. However, I have not heard about a burning feeling on your head and ears as a common symptom, and I have never seen this recognised as a symptom in studies - I will look into this. I would recommend you to speak to an AMN specialist to see if there is anything they can offer you to alleviate the symptoms. I have also heard that yoga can help the stiffness slightly, if you're able to, as it stretches out your joints (this may be something that others can vouch for).

Hi, when my AMN affected mum reported the head burning to her neurologist he excluded AMN as that’s the sensation normally associated to the long/peripheral nerves (the legs), not to the head. But I have since noticed that some MS affected people do report that too. I believe what we (and our consultants!) know about myelin loss is only part of the story...Take care.

spalding profile image
spalding in reply to monmon

Thanks for your reply I also think that not enough is known about female symptoms so everything is dismissed

jolocny profile image
jolocnyVolunteer

The ladies have told you as it is ... for now! The medical communities really need to sit up and take a much better look into female AMN patients! As for my knowledge (to date) the pain in your head and ears doesn't pertain to AMN. I've had some of this but it's a sign that a migraine is starting.

Please find a doc that's currently working with AMN patients and have them consider this problem. I hate to say it but most neurologists just don't have a clue.

Best of luck getting to the root of this!

How old are you? I am a male AMN patient. My mother is 65 years old, and my aunt is 55 years old. They are both carriers, but they have no neurological symptoms. Recently my wife hopes to be able to give birth to a daughter all the time, but I am very contradictory, do not know when can medical treatment conquer ALD, also do not know female carrier, come on probability how.

I began to have trouble with tremors in my hands years ago and was told it was due to my carrier status. Before they gave us AMN name. Then as more symptoms showed up, arm weakness and pain, head tremor, voice tremor, trouble swollowing, doctors would say yes they have seen in some other carriers. What I understand is now that it is acknowledged women do indeed have a disease and are not just carriers, doctors are just noting symptoms. So just because they say it is not AMN related may mean they have not seen it before however not everything can be attributed to AMN so I do hope you can find a doctor that will look at the big picture as well as AMN.

spalding profile image
spalding in reply to quilling

Thanks for that I do have a genetic consultant and a neurologist so I will speak to them about the other symptoms I just wish they new a bit more about female carriers and there symptoms

It is frustrating. When I 1st had "pins and needles" in my feet at 20 I was told I was fine. Funny how years later I was sent to the same neurologist for testing on my hands/arms and then he had learned some over the years. It is only recently that females have been acknowledged and not that they may have mild symptoms in later years. It was thought that with the mothers the doctors saw that their pains were from the physical care/lifting of the sons. Now the doctors are seeing younger women with symptoms. We still do not have our own named disease and still even ALD Connect refers to us as symptomatic carriers on the calls. Doctors are acknowledging and working at trying to learn and help us finally. Boys are the priority as they should be but I am hoping my daughter will not have to fight to educate the doctors. Keep going until you get answers you are satisfied with

monmon profile image
monmon in reply to quilling

I’ve been progressively symptomatic since my early 40s. My mum - suffering with excruciating chronic pain/neuropathy and finally unable to walk - become a wheelchair user at 70.

‘Symptomatic carriers’ my ar$e! During the 2018 ALD Life Family Weekend I asked the researchers present there to abandon the term ‘carrier’ once for all. I told them that if I’m carrying the cold virus and I have a runny nose I HAVE a cold end of story. One dr from Holland said I was right and they are abandoning that terminology. Hurray. People need to catch up ☺️

Still called carriers and AMN. when I went for a test the tech Googled AMN she looked at me with a question and i explained to her that women have no name of their own and are lumped in with the men even though we rarely have Addison's. I have asked about a different name and have been given many different reason why it has not happened. Hard enough to have a rare disease harder when doctors take the time to look it up find outdated and incorrect information, even on ALD websites!!

The hardest part with females is many neurological issues occur after 50 whether you have AMN in the family or not. Don't let AMN cloud the picture. Diabetes, MS, and other things may also cause similar symptoms.

Get a good general work up to make sure nothing else is going on.

I have had the occasional pain in my head over tha past 10 years around my ears and/or eyes which my gp put down to neuralgia. It can be very painful and don't know if it is related to Amn as I haven't heard of anyone else having it.

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