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Fredriech's Ataxia confirmed
I just got diagnosed with Fredreich's Ataxia through genetic testing. Finally got answers! Does anyone else have Fredriech's Ataxia? I am 38 but symptoms began 15 years ago. What can I expect? Anyone do therapy to help? I have lived with this for 15 years, and we'll just continue living life to the
I just got diagnosed with Fredreich's Ataxia through genetic testing. Finally got answers! Does anyone else have Fredriech's Ataxia? I am 38 but symptoms began 15 years ago. What can I expect? Anyone do therapy to help? I have lived with this for 15 years, and we'll just continue living life to the
1lazybug
in
Ataxia UK
6 years ago
Is no news, good news?
So… yesterday was “D Day.” My long awaited appointment with the “Big Dawg,” the Consultant Neurologist!! I had seen the neurology registrar, back on August 22, and she had ordered a battery of tests. Yesterday’s appointment was the follow-up, to go over the test results, that had hopefully determined
So… yesterday was “D Day.” My long awaited appointment with the “Big Dawg,” the Consultant Neurologist!! I had seen the neurology registrar, back on August 22, and she had ordered a battery of tests. Yesterday’s appointment was the follow-up, to go over the test results, that had hopefully determined
Hidden
in
PMRGCAuk
6 years ago
Is PA heretedary ?
I have just seen my fathers death certificate and he had PA, I have suspected I have b12 deficiency for a while but b12 is in range, 1st one was 287 the next about 5, my folate is on the low side, In my medical records which most are missing, I see in the past I had oval macrocytis and others just
I have just seen my fathers death certificate and he had PA, I have suspected I have b12 deficiency for a while but b12 is in range, 1st one was 287 the next about 5, my folate is on the low side, In my medical records which most are missing, I see in the past I had oval macrocytis and others just
Pascha1
in
Pernicious Anaemia Society
6 years ago
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Cabin Fever
Ok.. so I haven’t left the house now for nearly 3 weeks.. been sick off work as I am in terrible pain. I had my first Toci infusion and my neck and shoulders flared up so bad after I can’t move! My husband called 111 on Saturday and they sent the paramedics round who were brilliant of course! Morphine
Ok.. so I haven’t left the house now for nearly 3 weeks.. been sick off work as I am in terrible pain. I had my first Toci infusion and my neck and shoulders flared up so bad after I can’t move! My husband called 111 on Saturday and they sent the paramedics round who were brilliant of course! Morphine
sjhewitt42
in
NRAS
6 years ago
Here's our story
According to my husband's GP, Urologist and now, Oncologist, he shouldn't be at Stage 4 with multiple metasteses (skull, scapula and ribs). Just this past April (2018), his PSA reached 4, and his GP said that is was going up more quickly than he liked, and suggested we visit a Urologist. The Urologist
According to my husband's GP, Urologist and now, Oncologist, he shouldn't be at Stage 4 with multiple metasteses (skull, scapula and ribs). Just this past April (2018), his PSA reached 4, and his GP said that is was going up more quickly than he liked, and suggested we visit a Urologist. The Urologist
kick-prostate-cancer
in
Advanced Prostate Cancer
6 years ago
Genetic Testing for PKD1 vs PKD2
Has anyone gone through genetic testing to determine whether you have the PKD1 vs. PKD2 mutation? My nephrologist is thinking about requesting the test to help determine how quickly my PKD will progress. I'm 51, ADPKD Stage 3 with an eGFR of 31. Thanks.
Has anyone gone through genetic testing to determine whether you have the PKD1 vs. PKD2 mutation? My nephrologist is thinking about requesting the test to help determine how quickly my PKD will progress. I'm 51, ADPKD Stage 3 with an eGFR of 31. Thanks.
wirivergirl
in
PKD Charity for Autosomal Dominant PKD
6 years ago
After going to counseling for ...
After going to counseling for a while in August I thought I improved on my anxiety and that I was a bit better. I didn't have any friends for a few years until this September I managed to make some and I am friends with two girls but I can't be myself around them and it's like all the progress I made
After going to counseling for a while in August I thought I improved on my anxiety and that I was a bit better. I didn't have any friends for a few years until this September I managed to make some and I am friends with two girls but I can't be myself around them and it's like all the progress I made
maskedjinn
in
Anxiety and Depression Support
6 years ago
A midnight farewell.
Humans are complex beings, to say the least; And as such, if something goes wrong mentally, it tends to create a mental ripple effect doesn’t it? Causing things like emotional and behavioural changes, and what not. My past experiences for example, I fell for someone, happiest I’ve ever been, then they
Humans are complex beings, to say the least; And as such, if something goes wrong mentally, it tends to create a mental ripple effect doesn’t it? Causing things like emotional and behavioural changes, and what not. My past experiences for example, I fell for someone, happiest I’ve ever been, then they
Raidriar
in
Above & Beyond
6 years ago
London NHS Endocrinologist - Liothyronine
Hi, I'm new here. Just had results of DIO2 genetic test, showing that I have impaired conversion of t4 to t3. My GP has finally agreed to refer me to an endocrinologist but I see from others stories here that it can be quite a struggle to find a doctor who is open to prescribing liothyronine. I'd be
Hi, I'm new here. Just had results of DIO2 genetic test, showing that I have impaired conversion of t4 to t3. My GP has finally agreed to refer me to an endocrinologist but I see from others stories here that it can be quite a struggle to find a doctor who is open to prescribing liothyronine. I'd be
l15k
in
Thyroid UK
6 years ago
My boss is pregnant 😩😩😩
My boss told me yesterday she is pregnant and I'm distraught. She's in her late 30s and never wanted children as far as I know. Although she sadly had a miscarriage earlier this year she fell by accident so it was a big shock for her and me! I had a miscarriage last April which I don't think I'll ever
My boss told me yesterday she is pregnant and I'm distraught. She's in her late 30s and never wanted children as far as I know. Although she sadly had a miscarriage earlier this year she fell by accident so it was a big shock for her and me! I had a miscarriage last April which I don't think I'll ever
FakeHappy
in
Fertility Network UK
6 years ago
BFN 😢 again 💔
We had it confirmed by the clinic this morning. That’s our third failed cycle. It’s heartbreaking. We have been lucky to have NHS cycles but the next will be private. We’d like to have genetic testing done. Has anyone had any experience of: Karyotyoing blood test to check chromosomes? Pre implantation
We had it confirmed by the clinic this morning. That’s our third failed cycle. It’s heartbreaking. We have been lucky to have NHS cycles but the next will be private. We’d like to have genetic testing done. Has anyone had any experience of: Karyotyoing blood test to check chromosomes? Pre implantation
gemmy999
in
Fertility Network UK
6 years ago
Now I have seen a primary care doctor..
Im on zoloft I'm not too happy about it, I coast through the day without a thought in my mind... I start counseling next week, I guess this is better then having a meltdown for no reason... If you're truly suffering reach for help... I hope I can make it through this without meds because I just recently
Im on zoloft I'm not too happy about it, I coast through the day without a thought in my mind... I start counseling next week, I guess this is better then having a meltdown for no reason... If you're truly suffering reach for help... I hope I can make it through this without meds because I just recently
Knowone
in
Anxiety and Depression Support
6 years ago
The elephant in the room. We could end genetically inherited illness in this generation.
The elephant in the room that is not being discussed is the fact that we have the ability in this generation to end transmission of genetically inherited diseases. Genetic testing affords us the ability to choose whether or not to have children both in knowing that we hold the gene for the disease and
The elephant in the room that is not being discussed is the fact that we have the ability in this generation to end transmission of genetically inherited diseases. Genetic testing affords us the ability to choose whether or not to have children both in knowing that we hold the gene for the disease and
sunvox
in
Ataxia UK
6 years ago
cll w/ a twist - Stem cell
okay - been awhile - 8 years of cll without any great remission so i went to MSK since i hear good things. right off the bat they did a genetic test and found i have a mutated tp53 gene which basically keeps the medicine from working. I'm on venetoclax w/ rhituxin and have my levels good for first time
okay - been awhile - 8 years of cll without any great remission so i went to MSK since i hear good things. right off the bat they did a genetic test and found i have a mutated tp53 gene which basically keeps the medicine from working. I'm on venetoclax w/ rhituxin and have my levels good for first time
chemosuxs
in
CLL Support
6 years ago
SO... miserable
My blood test came back negative! I know this is actually good news but my reaction was shock, disbelief, confusion.. how could this be? is it possible that I could have a negative blood test and still have a postive endcsopy. I am in sorry shape right now... the gluten challneg has become unbearable
My blood test came back negative! I know this is actually good news but my reaction was shock, disbelief, confusion.. how could this be? is it possible that I could have a negative blood test and still have a postive endcsopy. I am in sorry shape right now... the gluten challneg has become unbearable
RcKitty
in
Gluten Free Guerrillas
6 years ago
DIO2 genetic testing?
Does anyone know more about testing the DIO2 gene for an inherited polymorphism which leads to problems converting T4 to the active T3? Is there anyone doing research on this? Thanks!
Does anyone know more about testing the DIO2 gene for an inherited polymorphism which leads to problems converting T4 to the active T3? Is there anyone doing research on this? Thanks!
momindenver
in
Thyroid UK
6 years ago
Does anyone have gene mutation ATP1a3?
Good Morning, My daughter has Cerebella Ataxia. She has recently received results from genetic testing which was carried out approximately 4 years ago. This results shows a genetic mutation to gene ATP1a3. My daughter who is now 12 years old and started high school in August, was prescribed Mycophenolate
Good Morning, My daughter has Cerebella Ataxia. She has recently received results from genetic testing which was carried out approximately 4 years ago. This results shows a genetic mutation to gene ATP1a3. My daughter who is now 12 years old and started high school in August, was prescribed Mycophenolate
Leona89
in
Ataxia UK
6 years ago
Newly diagnosed, extremely high PSA
Hello everyone, I'm new here and looking to share and learn. Here is my story: I'm 58. I had symptoms of BPH for a few years but never had a PSA test until this October. No other symptoms or health issues. Initial PSA 290 on Oct-3; test requested by regular doctor. Oct-5 initial urological consult;
Hello everyone, I'm new here and looking to share and learn. Here is my story: I'm 58. I had symptoms of BPH for a few years but never had a PSA test until this October. No other symptoms or health issues. Initial PSA 290 on Oct-3; test requested by regular doctor. Oct-5 initial urological consult;
bezen
in
Advanced Prostate Cancer
6 years ago
IAPT waiting list.
Hello everyone, I wondered how long other’s have waited to get counselling with the IAPT? I’ve been waiting for 5 months now and I’m still no where near the front apparently, don’t know where to turn as I’m struggling so much and things at home have got really bad with my OH. And my best friend is pregnant
Hello everyone, I wondered how long other’s have waited to get counselling with the IAPT? I’ve been waiting for 5 months now and I’m still no where near the front apparently, don’t know where to turn as I’m struggling so much and things at home have got really bad with my OH. And my best friend is pregnant
Hidden
in
Fertility Network UK
6 years ago
MRI of brain - cerebellum atrophy or normal?
I just had a genetic test done trying to figure out which type of Ataxia. No results yet. Anyway, I have also had an MRI which showed no cerebellum atrophy. My symptoms started close to 13-15 years ago. Has anyone had an MRI show unremarkable brain with no leisons or cerebellum atrophy and still been
I just had a genetic test done trying to figure out which type of Ataxia. No results yet. Anyway, I have also had an MRI which showed no cerebellum atrophy. My symptoms started close to 13-15 years ago. Has anyone had an MRI show unremarkable brain with no leisons or cerebellum atrophy and still been
1lazybug
in
Ataxia UK
6 years ago
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