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Armodafinil
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Genome sequencing
Interesting article that is related to our disease. The 100,000 Genomes Project involves several teams of scientists, all of whom have been working towards a remarkably ambitious goal: the sequencing of 100,000 genomes of individuals affected by rare disorders and cancers. https://www.theguardian.com
Interesting article that is related to our disease. The 100,000 Genomes Project involves several teams of scientists, all of whom have been working towards a remarkably ambitious goal: the sequencing of 100,000 genomes of individuals affected by rare disorders and cancers. https://www.theguardian.com
monkeybus
in
AMN EASIER
7 years ago
Paying for having fun.
I sure enjoyed my time hunting the last couple of days with my son and nephews but of course it came with a cost. Today my fatigue has me kicked to the curb. In so darn tired and weak its an effort to make it to the bathroom. But if that's the cost of being normal so be it. God willing I will do it
I sure enjoyed my time hunting the last couple of days with my son and nephews but of course it came with a cost. Today my fatigue has me kicked to the curb. In so darn tired and weak its an effort to make it to the bathroom. But if that's the cost of being normal so be it. God willing I will do it
Doubled51
in
My MSAA Community
7 years ago
Marijuana for spasticity, muscle spasms, pain.
I used to love smoking dope, once was a time when I couldn't imagine life without it. I was unaware of my AMN, And though I was all for legalisation, I honestly believed all of the medical Marijuana angles were nonsense. Time moves on, and here I am, older, and AMN continuing it's slow burn through
I used to love smoking dope, once was a time when I couldn't imagine life without it. I was unaware of my AMN, And though I was all for legalisation, I honestly believed all of the medical Marijuana angles were nonsense. Time moves on, and here I am, older, and AMN continuing it's slow burn through
monkeybus
in
AMN EASIER
7 years ago
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Modafinil for fatigue
Hi I've just been reading about a drug called modafinil which I looked up after reading a post on a FB site for people with PBC. This person stated she had seen a marked improvement in concentration and cognitive function since taking it. I suffer badly with this and fatigue and lately have felt I might
Hi I've just been reading about a drug called modafinil which I looked up after reading a post on a FB site for people with PBC. This person stated she had seen a marked improvement in concentration and cognitive function since taking it. I suffer badly with this and fatigue and lately have felt I might
Heleno
in
PBC Foundation
7 years ago
Piracetam, 4-AP, spasticity, myelin, constipation.
I have mentioned Piracetam several times before. I first tried it just for the hell of it. I’d taken it way, way back when I was in University as a Nootropic, a smart-drug. I couldn’t say if it made me any smarter, but I recalled how pleasant the feeling was. Like a nice, sunny day. Took it a few
I have mentioned Piracetam several times before. I first tried it just for the hell of it. I’d taken it way, way back when I was in University as a Nootropic, a smart-drug. I couldn’t say if it made me any smarter, but I recalled how pleasant the feeling was. Like a nice, sunny day. Took it a few
monkeybus
in
AMN EASIER
7 years ago
RLS & Sleep Aponea
I unfortunately suffer from both - I take .27mg (.09mg x 3 times) of pramipexole for RLS & 150mg/ 200mg of modafinil for Aponea (I had a bad reaction to the machine). The modifinil is to keep you awake & the we all know about pramipexole- however unfortunately one of the side effects of pramipexole is
I unfortunately suffer from both - I take .27mg (.09mg x 3 times) of pramipexole for RLS & 150mg/ 200mg of modafinil for Aponea (I had a bad reaction to the machine). The modifinil is to keep you awake & the we all know about pramipexole- however unfortunately one of the side effects of pramipexole is
Peterhyates7
in
Restless Legs Syndrome
7 years ago
Legalise cannabis as treatment of last resort for MS, says charity
MS Society says there is sufficient evidence of drug’s effectiveness to relax ban for patients with no other options https://www.theguardian.com/society/2017/jul/27/legalise-cannabis-as-treatment-of-last-resort-for-multiple-sclerosis-says-charity Disclosure - I don't smoke dope, no do I have MS. But
MS Society says there is sufficient evidence of drug’s effectiveness to relax ban for patients with no other options https://www.theguardian.com/society/2017/jul/27/legalise-cannabis-as-treatment-of-last-resort-for-multiple-sclerosis-says-charity Disclosure - I don't smoke dope, no do I have MS. But
monkeybus
in
AMN EASIER
7 years ago
One year
It was one year on June 28 since I went numb. Many of you have heard my tale. I was athletic, 68-year-old long distance bicyclist averaging 150 to 200 miles a week! I spent most of the last year sitting up in bed, keeping my feet warm. Thank goodness I wound up with excellent doctors at the MS CLINIC
It was one year on June 28 since I went numb. Many of you have heard my tale. I was athletic, 68-year-old long distance bicyclist averaging 150 to 200 miles a week! I spent most of the last year sitting up in bed, keeping my feet warm. Thank goodness I wound up with excellent doctors at the MS CLINIC
CalfeeChick
CommunityAmbassador
in
My MSAA Community
7 years ago
Feeling sorry for myself
I feel so sad today im so so tired,even though I'm on modafinil I am off today from work and was hoping to achieve something in my house or in my garden. But instead I'm sitting here feeling really down , I would cry ,but I have no tears ( I miss my tears).I have sjogrens and under active thyroid as
I feel so sad today im so so tired,even though I'm on modafinil I am off today from work and was hoping to achieve something in my house or in my garden. But instead I'm sitting here feeling really down , I would cry ,but I have no tears ( I miss my tears).I have sjogrens and under active thyroid as
flora
in
PBC Foundation
7 years ago
repost marijuana drug interaction article
formatting lost...sorry you can also likely search your specific meds and marijuana for interactions if the article feels too onerous (I've taught pharmacology so I didn't appreciate how complex this might seem) www.medscape.com Stirring the Pot: Potential Drug Interactions With Marijuana Sarah T
formatting lost...sorry you can also likely search your specific meds and marijuana for interactions if the article feels too onerous (I've taught pharmacology so I didn't appreciate how complex this might seem) www.medscape.com Stirring the Pot: Potential Drug Interactions With Marijuana Sarah T
erash
in
My MSAA Community
7 years ago
Memorial weekend
What a wonderful weekend! I was able to stay up and active 4 days in a row! A friend and I drove over Donner Summit and saw deep snow ❄️ on the higher mtns. We went to Greenville, CA. My friend was riding a 100 mile bicycle ride. I was able to drive about 160 miles on the way up and drove as a support
What a wonderful weekend! I was able to stay up and active 4 days in a row! A friend and I drove over Donner Summit and saw deep snow ❄️ on the higher mtns. We went to Greenville, CA. My friend was riding a 100 mile bicycle ride. I was able to drive about 160 miles on the way up and drove as a support
CalfeeChick
CommunityAmbassador
in
My MSAA Community
7 years ago
Lyrica feedback?
Fellow AMNers I would like to know what your experience with lyrica has been. I've read almost too many threads that have likened it to either their savior or the devil. I know many have posted on this and would like more feedback from those with AMN and what you like and don't like about the treatment
Fellow AMNers I would like to know what your experience with lyrica has been. I've read almost too many threads that have likened it to either their savior or the devil. I know many have posted on this and would like more feedback from those with AMN and what you like and don't like about the treatment
Seifert_09
in
AMN EASIER
7 years ago
Testing Results
Hello all, after many tests, waiting 6 months and having even more testing done these are the results. 1. There are 20+ white spots on my brain. No changes in shape, or size. No new spots by comparison with 10-13-16 MRI's. 2. My nerve conduction tests all fall within normal ranges and show no abnormalities
Hello all, after many tests, waiting 6 months and having even more testing done these are the results. 1. There are 20+ white spots on my brain. No changes in shape, or size. No new spots by comparison with 10-13-16 MRI's. 2. My nerve conduction tests all fall within normal ranges and show no abnormalities
CalfeeChick
CommunityAmbassador
in
My MSAA Community
7 years ago
Biotin clinical trial
Has this already been posted? https://clinicaltrials.gov/ct2/show/NCT02961803 I'm doing my own, ongoing trial with Biotin. And 4-AP. And 4-AP-3-MEOH. And Modafinil. I'll recommend them all, and Lyrica for the spasms (if you enjoy being stoned). Biotin is cheap and OTC. Worth a go.
Has this already been posted? https://clinicaltrials.gov/ct2/show/NCT02961803 I'm doing my own, ongoing trial with Biotin. And 4-AP. And 4-AP-3-MEOH. And Modafinil. I'll recommend them all, and Lyrica for the spasms (if you enjoy being stoned). Biotin is cheap and OTC. Worth a go.
monkeybus
in
AMN EASIER
8 years ago
Fatigue
Hi are there any Ataxians out there who have tried modafinil for fatigue?
Hi are there any Ataxians out there who have tried modafinil for fatigue?
anihol
in
Ataxia UK
8 years ago
Has anyone been prescribed modafinil to help in the short term with fatigue?
I find the most difficult part of this disease is the severe fatigue. I've been 6 months on methotrexate and am seeing the rheumatologist tomorrow and want a strategy to deal with the fatigue whilst waiting, hopefully for another DMARD medication to do its work. I work fulltime but since my return to
I find the most difficult part of this disease is the severe fatigue. I've been 6 months on methotrexate and am seeing the rheumatologist tomorrow and want a strategy to deal with the fatigue whilst waiting, hopefully for another DMARD medication to do its work. I work fulltime but since my return to
Barb66
in
NRAS
8 years ago
Modafinil
Hello everybody. Me, 52, AMN, trerible spasticity, spasms. That's me, first post and please forgive my English. Does anyone have any idea where I can ordder Modafinil? My fatigue is awful, very bad. Any help is thanked.
Hello everybody. Me, 52, AMN, trerible spasticity, spasms. That's me, first post and please forgive my English. Does anyone have any idea where I can ordder Modafinil? My fatigue is awful, very bad. Any help is thanked.
shaazam321
in
AMN EASIER
8 years ago
taking Waklert (armodafinil) regularly
Incidentally,
Armodafinil
my 20-year-old son who used it for sleep avoidance during long periods of intense study recommended me to take it. Initially, I was dead against any smart drugs that stimulate mental alertness.
Incidentally,
Armodafinil
my 20-year-old son who used it for sleep avoidance during long periods of intense study recommended me to take it. Initially, I was dead against any smart drugs that stimulate mental alertness.
FitBugs
in
Brain health
8 years ago
Newly diagnosed
I am so glad I found 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. I live in Italy, don't speak Italian (I teach English
I am so glad I found 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. I live in Italy, don't speak Italian (I teach English
russianbob
in
AMN EASIER
8 years ago
Spasticity (Selective Dorsal Rhizotomy)
Was bored last night, Googled "revolutionary spasticity cure". Got this... http://thejupital.com/lottery-winners-pay-for-revolutionary-operation/ I'd never heard of Selective Dorsal Rhizotomy before. https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0051845/ Used primarily for children with Cerebral Palsy
Was bored last night, Googled "revolutionary spasticity cure". Got this... http://thejupital.com/lottery-winners-pay-for-revolutionary-operation/ I'd never heard of Selective Dorsal Rhizotomy before. https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0051845/ Used primarily for children with Cerebral Palsy
monkeybus
in
AMN EASIER
8 years ago
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