Experiences with Adrenomyeloneuropathy | HealthUnlocked

17 public posts

Hello, everyone,

https://adrenoleukodystrophynews.com/2019/06/11/combo-of-antioxidants-a-potential-therapy-for-adrenomyeloneuropathy-trial-suggests/ Hello, everyone, today we saw a new amn trial, and it has been phase 2 trial.https://adrenoleukodystrophynews.com/2019/06/11/combo-of-antioxidants-a-potential-therapy-for-adrenomyeloneuropathy-trial-suggests/ Hello, everyone, today we saw a new amn trial, and it has been phase 2 trial.

jayxiein AMN EASIER

An artificial brain

Scientists have grown a miniature brain in a dish with a spinal cord and muscles attached, an advance that promises to accelerate the study of conditions such as motor neurone disease (and I can only assume Adrenomyeloneuropathy). Pack it all up, boys and girls. We are cured.Scientists have grown a miniature brain in a dish with a spinal cord and muscles attached, an advance that promises to accelerate the study of conditions such as motor neurone disease (and I can only assume Adrenomyeloneuropathy). Pack it all up, boys and girls. We are cured.

monkeybusin AMN EASIER

Survey-based Natural History Study for Men and Women with AMN

Approximately 40-45 % of males and 50-65% of female carriers with X-linked adrenoleukodystrophy develop the adult-onset form called adrenomyeloneuropathy (AMN).Approximately 40-45 % of males and 50-65% of female carriers with X-linked adrenoleukodystrophy develop the adult-onset form called adrenomyeloneuropathy (AMN).

SongStreamin AMN EASIER

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Possible causes of Ataxia

Pyramidal signs, sensory loss: acquired myelopathies; genetic myelopathies [adrenomyeloneuropathy; hereditary spastic paraparesis (HSP)]; Friedrich’s ataxia (FA); MS; NS. Sensory loss, hyporeflexia: AR ataxias; SPN and SG (“sensory ataxia”); GA; MF; AVED; NS.Pyramidal signs, sensory loss: acquired myelopathies; genetic myelopathies [adrenomyeloneuropathy; hereditary spastic paraparesis (HSP)]; Friedrich’s ataxia (FA); MS; NS. Sensory loss, hyporeflexia: AR ataxias; SPN and SG (“sensory ataxia”); GA; MF; AVED; NS.

wobblybeein Ataxia UK

Disease Maps

https://www.diseasemaps.org/leukodystrophy/adrenomyeloneuropathy/map/ What say, folks? Shall we all register and plot ourselves around the world?https://www.diseasemaps.org/leukodystrophy/adrenomyeloneuropathy/map/ What say, folks? Shall we all register and plot ourselves around the world?

monkeybusin AMN EASIER

DHEA

Does everyone with the adrenal form of adrenomyeloneuropathy take DHEA? If so please share your experiences. If not, and you’d like me to elaborate on why it’s absolutely essential, please let me know,Does everyone with the adrenal form of adrenomyeloneuropathy take DHEA? If so please share your experiences. If not, and you’d like me to elaborate on why it’s absolutely essential, please let me know,

bluejadedwhoin AMN EASIER

4-AP improves motor function in patients with AMN

Wolfgang Köhler (Germany) Leg stiffness and walking disabilities are leading symptoms in patients with Adrenomyeloneuropathy (AMN). The reasons for this spasticity are spinal cord long nerve fiber and myelin damage.Wolfgang Köhler (Germany) Leg stiffness and walking disabilities are leading symptoms in patients with Adrenomyeloneuropathy (AMN). The reasons for this spasticity are spinal cord long nerve fiber and myelin damage.

monkeybusin AMN EASIER

Severe congestive heart failure caused by adrenomyeloneuropathy and hyperthyroidism

Here is one to cheer everyone up. As if we didn't have enough to worry about. https://www.researchgate.net/publication/281732912_Severe_congestive_heart_failure_caused_by_adrenomyeloneuropathy_and_hyperthyroidismHere is one to cheer everyone up. As if we didn't have enough to worry about. https://www.researchgate.net/publication/281732912_Severe_congestive_heart_failure_caused_by_adrenomyeloneuropathy_and_hyperthyroidism

monkeybusin AMN EASIER

Podcast Session: "Living with AMN – A Clinical & Research Perspective”

From the AMN RareShare Community: We are proud to invite you for the upcoming podcast session discussing: “Living with Adrenomyeloneuropathy – A Clinical & Research Perspective” featuring Dr Paul Orchard, MD and Dr William Rizzo, MD On June 14, 2017 at 10:00 AM EDT The 45 minute segment will featureFrom the AMN RareShare Community: We are proud to invite you for the upcoming podcast session discussing: “Living with Adrenomyeloneuropathy – A Clinical & Research Perspective” featuring Dr Paul Orchard, MD and Dr William Rizzo, MD On June 14, 2017 at 10:00 AM EDT The 45 minute segment will feature

SongStreamin AMN EASIER

ALD Connect's Breakout Session for Men with AMN

Join the discussion moderated by #ALD and #AMN patient advocate Justin D'Agostino as men talk about important issues they confront with adrenomyeloneuropathy. Here's the link to the event to register: https://www.facebook.com/events/1256042984503457/Join the discussion moderated by #ALD and #AMN patient advocate Justin D'Agostino as men talk about important issues they confront with adrenomyeloneuropathy. Here's the link to the event to register: https://www.facebook.com/events/1256042984503457/

bsc78in AMN EASIER

Newly diagnosed

I have recently been diagnosed with Adrenomyeloneuropathy. I am 35, have spasticity, numbness in both feet, pins and needles, and I am so tired. Yesterday I spent the entire day reading through the posts on this site.I have recently been diagnosed with Adrenomyeloneuropathy. I am 35, have spasticity, numbness in both feet, pins and needles, and I am so tired. Yesterday I spent the entire day reading through the posts on this site.

russianbobin AMN EASIER

Ayahuasca

Magic Mushrooms do nothing for Adrenomyeloneuropathy. There is an African hallucinogen, Iboga, touted as a cure-all as well. Discuss.Magic Mushrooms do nothing for Adrenomyeloneuropathy. There is an African hallucinogen, Iboga, touted as a cure-all as well. Discuss.

monkeybusin AMN EASIER

Another drug

In the second form, adrenomyeloneuropathy, symptoms appear between 20 and 30 years. Patients have stiffness and spasticity in the legs, and slowly progresses to leave patients unable wheelchair.In the second form, adrenomyeloneuropathy, symptoms appear between 20 and 30 years. Patients have stiffness and spasticity in the legs, and slowly progresses to leave patients unable wheelchair.

monkeybusin AMN EASIER

Clinical and electrophysiological improvement of adrenomyeloneuropathy with steroid treatment

This is very interesting. I know a lot of us supplement homones, but have a good read of this. http://jnnp.bmj.com/content/74/6/822.fullThis is very interesting. I know a lot of us supplement homones, but have a good read of this. http://jnnp.bmj.com/content/74/6/822.full

monkeybusin AMN EASIER

Adrenomyeloneuropathy - does anyone have any info of specialists in the north west of the uk??

my brother-inlaw has Adrenomyeloneuropathy and the doctors around here are not really treating him very well with this as we know his cousin who lives along way from us has this condition and he gets better treatment. we have read up on him being able to have bone marrow transplant and when my husbandmy brother-inlaw has Adrenomyeloneuropathy and the doctors around here are not really treating him very well with this as we know his cousin who lives along way from us has this condition and he gets better treatment. we have read up on him being able to have bone marrow transplant and when my husband

vicarlin AMN EASIER

Neuropathic Pain

Hi, I have a rare disease Adrenomyeloneuropathy and I suffer with bad muscle spasms and neuropathic pain, I've tried loads of medication but they just make me feel like a zombie!Hi, I have a rare disease Adrenomyeloneuropathy and I suffer with bad muscle spasms and neuropathic pain, I've tried loads of medication but they just make me feel like a zombie!

StevenSimsin Pain Concern

Vitamin D3 and Himalayan Salt

Hi, I have a rare disease Adrenomyeloneuropathy and I suffer muscle spasms in my arms and legs and I have found that Vitamin D3 stops them! however vitamin d uses magnesium to be converted to it's active form in the bloodstream and after taking it for 2 months it has caused Magnesium dificiency!Hi, I have a rare disease Adrenomyeloneuropathy and I suffer muscle spasms in my arms and legs and I have found that Vitamin D3 stops them! however vitamin d uses magnesium to be converted to it's active form in the bloodstream and after taking it for 2 months it has caused Magnesium dificiency!

StevenSimsin Restless Legs Syndrome