Search
Search
About
Log in
Join
Experiences with
Ataxic gait
Posts
Communities
221 public posts
Filter results
Trehalose support growing.
These are email responses to my request for help initiating a clinical trial of orally ingested trehalose. Of interest I would note that one doctor had this to say: "There are a few patients I would like to share this information with while we figure out next steps." Dear Joe, Very many thanks
These are email responses to my request for help initiating a clinical trial of orally ingested trehalose. Of interest I would note that one doctor had this to say: "There are a few patients I would like to share this information with while we figure out next steps." Dear Joe, Very many thanks
JP66
in
Ataxia UK
8 years ago
Death in the family and the Trehalose discussion.
Sorry I have been unresponsive and kind of out of it. My husband very unexpectedly died (way 2 young) and I have much to sort out. Of course this entire saga affected my ataxia very badly. I am happy for those positively affected by Trehalose and wish everyone well as ever N
Sorry I have been unresponsive and kind of out of it. My husband very unexpectedly died (way 2 young) and I have much to sort out. Of course this entire saga affected my ataxia very badly. I am happy for those positively affected by Trehalose and wish everyone well as ever N
neta
in
Ataxia UK
8 years ago
Vision problems
I was admitted to hospital when an
ataxic
gait
with myclonic jerks kicked in, and then in a pattern very familiar to you all, all tests returned clear. At the time I likened my legs to wearing Wallace and Gromits Wrong Trousers! They just didn't feel like my legs!
I was admitted to hospital when an
ataxic
gait
with myclonic jerks kicked in, and then in a pattern very familiar to you all, all tests returned clear. At the time I likened my legs to wearing Wallace and Gromits Wrong Trousers! They just didn't feel like my legs!
Kazandoz
in
Functional Neurological Disorder - FND Hope
8 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Ataxia and Heart Problems
I have FA, diagnosed about 20 years ago at age 19. I have been very lucky and progression has been slow. However my heart is not doing so well. I have Dilated Cardiomyopathy, suffer from Atrial Fibrilation/Flutter/BiGeminy, have an ICD implanted and had two ablations in the past year. I was cardio inverted
I have FA, diagnosed about 20 years ago at age 19. I have been very lucky and progression has been slow. However my heart is not doing so well. I have Dilated Cardiomyopathy, suffer from Atrial Fibrilation/Flutter/BiGeminy, have an ICD implanted and had two ablations in the past year. I was cardio inverted
Rudders_77
in
Ataxia UK
8 years ago
Oral Ingestion of Trehalose. A human clinical trial!!!
Ladies and Gentelman, I am sorry that this study has not been published on every ataxia, huntington, parkinson, etc forum, but this morning I found what I consider the Holy Grail of trehalose studies. This was a double blind human clinical trial of oral ingestion of trehalose. The study proved trehalose
Ladies and Gentelman, I am sorry that this study has not been published on every ataxia, huntington, parkinson, etc forum, but this morning I found what I consider the Holy Grail of trehalose studies. This was a double blind human clinical trial of oral ingestion of trehalose. The study proved trehalose
JP66
in
Ataxia UK
8 years ago
Last Post - Two Years Ago
It's been two years since my last post - possibly more. Suffice to say time does pass quick when your memory is not working 100% and even simple things like brewing a cup of tea is writing it down beforehand so I do not forget to boil the water, ha ha. But in the two years - or more - I've seen all sorts
It's been two years since my last post - possibly more. Suffice to say time does pass quick when your memory is not working 100% and even simple things like brewing a cup of tea is writing it down beforehand so I do not forget to boil the water, ha ha. But in the two years - or more - I've seen all sorts
Hidden
in
Ataxia UK
8 years ago
Controversy here
I am glad that someone has weighed in again on the Trehalose issue. Well either its great or its not. Ms. Millman is entitled to speak her mind but so is the person who raised this issue. Perhaps Ataxia UK can find someone reputable who may have an opinion that many here might want to hear. Why all
I am glad that someone has weighed in again on the Trehalose issue. Well either its great or its not. Ms. Millman is entitled to speak her mind but so is the person who raised this issue. Perhaps Ataxia UK can find someone reputable who may have an opinion that many here might want to hear. Why all
neta
in
Ataxia UK
8 years ago
Reasearch medical marihuana for ataxia
Hello. These times of news sharing it is hard to not notice all the videos and reports on what tremendous effects CBD oil and cannabis has on different neurological diseases. Numerous report it has stopped life threatening seizures, some reports claims very positve effect on parkinson's and i have
Hello. These times of news sharing it is hard to not notice all the videos and reports on what tremendous effects CBD oil and cannabis has on different neurological diseases. Numerous report it has stopped life threatening seizures, some reports claims very positve effect on parkinson's and i have
thenwg
in
Ataxia UK
8 years ago
A response to 2Sunny regarding recent posts on trehalose and nicotinamide riboside
You quite rightly preface all your remarks by stating that you are not a doctor; but then you proceed in an attempt to convince people that they should experiment with two substances, the safety of which is not proven in the quantities in which they need to be taken. The safety of our Friends and
You quite rightly preface all your remarks by stating that you are not a doctor; but then you proceed in an attempt to convince people that they should experiment with two substances, the safety of which is not proven in the quantities in which they need to be taken. The safety of our Friends and
SueMillman
Ataxia UK
in
Ataxia UK
8 years ago
Cerebellar ataxia and benefits: PIP or ESA?
Hello everyone, Newbie here and first post. I was recently diagnosed with cerebellar ataxia. After 3/4 years of typical meandering gait I had noticed a deterioration in recent months together with loss of sensation and use of right hand, extreme fatigue, problems swallowing with food, etc. I had put
Hello everyone, Newbie here and first post. I was recently diagnosed with cerebellar ataxia. After 3/4 years of typical meandering gait I had noticed a deterioration in recent months together with loss of sensation and use of right hand, extreme fatigue, problems swallowing with food, etc. I had put
Aspinal4
in
Ataxia UK
8 years ago
Trehalose and nicotinamide riboside as treatments for ataxia
Dear All We understand completely, the frustration at having to wait for science to take its course before treatments and cures become available. However, the long term safety and efficacy has not yet been proven for either Cabaletta (trehalose) or Niagen (nicotinamide riboside) so we CANNOT recommend
Dear All We understand completely, the frustration at having to wait for science to take its course before treatments and cures become available. However, the long term safety and efficacy has not yet been proven for either Cabaletta (trehalose) or Niagen (nicotinamide riboside) so we CANNOT recommend
SueMillman
Ataxia UK
in
Ataxia UK
8 years ago
Partial Possible Treatment for some SCAs.
EDIT: This is a post I made on another site and one that is linked in another post on this site. I am soon going to start a "Go Fund Me" campaign to begin a patient lead research trial. If you have SCA1,3,14,17 or Telangiectasia I beg you to please contact me at PeckJA@aol.com. I am helping my father
EDIT: This is a post I made on another site and one that is linked in another post on this site. I am soon going to start a "Go Fund Me" campaign to begin a patient lead research trial. If you have SCA1,3,14,17 or Telangiectasia I beg you to please contact me at PeckJA@aol.com. I am helping my father
2Sunny
in
Ataxia UK
8 years ago
Ataxia
Hi.need some advise.just been diagnosed as aving type sca 17.my family as.went to a neurologist and he did some tests.walking ect.one of my brothers is got an appointment and hes got to av a blood test.can my neurogist know iv got it without a blood test. Thanks.
Hi.need some advise.just been diagnosed as aving type sca 17.my family as.went to a neurologist and he did some tests.walking ect.one of my brothers is got an appointment and hes got to av a blood test.can my neurogist know iv got it without a blood test. Thanks.
Nottscounty1862
in
Ataxia UK
8 years ago
Ataxia - short lived but dramatic instant improvement with gluten-free diet.
I am a 77 year-old retired pathologist and new here. My illness began 6 years ago, with difficulty in walking, upset balance and problems getting in and out of cars. I was fairly sure I had ataxia of some sort and was eventually seen by the neurological team in Nottingham. They disagreed with the idea
I am a 77 year-old retired pathologist and new here. My illness began 6 years ago, with difficulty in walking, upset balance and problems getting in and out of cars. I was fairly sure I had ataxia of some sort and was eventually seen by the neurological team in Nottingham. They disagreed with the idea
Malcex
in
Ataxia UK
8 years ago
Appeal for Life-Changing Mobility Equipment
https://www.gofundme.com/life-changingmobilityequipment My name is Richard Brown. I am 40 and was diagnosed with a progressive nervous disorder, Friedreich's Ataxia, in my teens and have used a wheelchair for 16 years. I am trying to raise funds for an attachment that turns my wheelchair into an
https://www.gofundme.com/life-changingmobilityequipment My name is Richard Brown. I am 40 and was diagnosed with a progressive nervous disorder, Friedreich's Ataxia, in my teens and have used a wheelchair for 16 years. I am trying to raise funds for an attachment that turns my wheelchair into an
RCBrownMBE
in
Ataxia UK
8 years ago
Vitamin B12
Hi everyone Can anyone advise please. My 13 year old son has friedrichs ataxia, his gp just done a blood test which shows vit b12 as 391 Is this normal?
Hi everyone Can anyone advise please. My 13 year old son has friedrichs ataxia, his gp just done a blood test which shows vit b12 as 391 Is this normal?
simon111
in
Ataxia UK
8 years ago
Living with Ataxia
I was diagnosed eventually about five years' ago. Originally thought I had ME. No pain just co-ordination, eyesight and mobility problems. Gets more and more difficult to get about the house with rollator. Have tried several medications, including Gabapentin, Busopine and a couple of others but nothing
I was diagnosed eventually about five years' ago. Originally thought I had ME. No pain just co-ordination, eyesight and mobility problems. Gets more and more difficult to get about the house with rollator. Have tried several medications, including Gabapentin, Busopine and a couple of others but nothing
goodenough
in
Ataxia UK
8 years ago
Ataxia, stomach problems and lycopene
Although i tested negative for gluten ataxia (I have "idiopathic" SCA), I am considering starting a gluten-free diet. Partly due to comments I have read on here. Quite a few people with ataxia, but not gluten ataxia, have reported only positive results after removing gluten from their diet. Somebody
Although i tested negative for gluten ataxia (I have "idiopathic" SCA), I am considering starting a gluten-free diet. Partly due to comments I have read on here. Quite a few people with ataxia, but not gluten ataxia, have reported only positive results after removing gluten from their diet. Somebody
Iain_100
in
Ataxia UK
8 years ago
Sickness
does anyone have trouble with sickness ? My diet has changed to very bland food have never liked spicy food so that has never bothered me but recently been having bouts of sickness after eating ,its usually about an hour after eating I get a pain like really bad indegestion then end up being sick then
does anyone have trouble with sickness ? My diet has changed to very bland food have never liked spicy food so that has never bothered me but recently been having bouts of sickness after eating ,its usually about an hour after eating I get a pain like really bad indegestion then end up being sick then
gossy
in
Ataxia UK
8 years ago
cannabis and ataxia
hi ive been a lot lately about the use of cannabis in neurological pain what do people think is it worth trying surely must be preferable to opoid painkillers
hi ive been a lot lately about the use of cannabis in neurological pain what do people think is it worth trying surely must be preferable to opoid painkillers
Guyb
in
Ataxia UK
8 years ago
1
...
7
8
9
...
12
Next page
10
Filter results
Clear filters
Posted in
All communities
Ataxia UK
219 results
Functional Neurological Disorder - FND Hope
1 result
Pernicious Anaemia Society
1 result
Sort by
Most Relevant
Newest