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Experiences with
Amyotrophic lateral sclerosis (ALS)
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Update 7.0
Things have been coming along pretty well. Iron levels are gradually increasing, resulting in an increase in erythrocytes. On 10/07 at my PCP lab, HCT = 47.7% and HGB = 15.3. Subsequently labs at hematology lab, HCT dropped to 44.4 and 46.0. HBG = 14.7 and 15.0. Since HGB is staying in the desired
Things have been coming along pretty well. Iron levels are gradually increasing, resulting in an increase in erythrocytes. On 10/07 at my PCP lab, HCT = 47.7% and HGB = 15.3. Subsequently labs at hematology lab, HCT dropped to 44.4 and 46.0. HBG = 14.7 and 15.0. Since HGB is staying in the desired
hunter5582
in
Fight MPN
2 years ago
worried about high levels
Good morning everyone. It has been a while, and I had asked for blood tests before I went and had some private B12 injections, as my own Doctor had stopped them. My B12 was also low due to malabsorbtion, and PA results were borderline. I am symptomatic and feeling really bad lately. Its over a year
Good morning everyone. It has been a while, and I had asked for blood tests before I went and had some private B12 injections, as my own Doctor had stopped them. My B12 was also low due to malabsorbtion, and PA results were borderline. I am symptomatic and feeling really bad lately. Its over a year
maclin232
in
Pernicious Anaemia Society
2 years ago
Pluvicto update
Had #4 last week. My PSA has dropped from 120 to 80. ALK Phos now normal! CT showed decreased node size with one new spot. The bone scan showed a worsening in all old spots (multiple bilateral ribs and many vertebrae involved) and we have some new. The thought is it may be a ‘flare’. We will continue
Had #4 last week. My PSA has dropped from 120 to 80. ALK Phos now normal! CT showed decreased node size with one new spot. The bone scan showed a worsening in all old spots (multiple bilateral ribs and many vertebrae involved) and we have some new. The thought is it may be a ‘flare’. We will continue
Bartonneal
in
Advanced Prostate Cancer
2 years ago
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Annovis Bio Buntanetap: Excellent Phase 2 Trial Results, Phase 3 Trial Now Enrolling
Not just, say, beta and tau [Alzhemer's], which are the most commonly mentioned, but there’s also alpha synuclein and there’s TDP-43 [the cause of
ALS
]. These proteins all kill nerve cells. Now, what our drug does is it inhibits them all. How can it work on four totally different proteins?
Not just, say, beta and tau [Alzhemer's], which are the most commonly mentioned, but there’s also alpha synuclein and there’s TDP-43 [the cause of
ALS
]. These proteins all kill nerve cells. Now, what our drug does is it inhibits them all. How can it work on four totally different proteins?
park_bear
in
Cure Parkinson's
1 year ago
twitching
I saw it can be early warning of
ALS
which makes me pray that Parkinson's is my diagnosis. Any thoughts, insight and support?😪
I saw it can be early warning of
ALS
which makes me pray that Parkinson's is my diagnosis. Any thoughts, insight and support?😪
Thyroid2468
in
Cure Parkinson's
2 years ago
Dosage of Ursodiol
Looking at my M2 Antibody levels from the last 2 blood panels, it looks like I have PBC. My other levels, GGT and Alk Phos are within normal range. My doctor has prescribed Ursodiol for me to treat the PBC and the dosage seems high. I am to take a 500mg tablet in the morning and a 250mg tablet at
Looking at my M2 Antibody levels from the last 2 blood panels, it looks like I have PBC. My other levels, GGT and Alk Phos are within normal range. My doctor has prescribed Ursodiol for me to treat the PBC and the dosage seems high. I am to take a 500mg tablet in the morning and a 250mg tablet at
Greenfern
in
PBCers Organization
2 years ago
Hello
The only reason I have strenght to endure is I am the primary care giver for my mother whom is now parapalegic due to
ALS
(lou gerrigs disese). I just want to say hi. And I have been in this world and dealing with this for 34 years. And have 3 extended stay vacations in the looney bin.
The only reason I have strenght to endure is I am the primary care giver for my mother whom is now parapalegic due to
ALS
(lou gerrigs disese). I just want to say hi. And I have been in this world and dealing with this for 34 years. And have 3 extended stay vacations in the looney bin.
discgolfrules
in
Restless Legs Syndrome
2 years ago
Advice on my blood test results, please.
Hello, I was diagnosed in August and really benefitted from advice from people here. I am lacking confidence in the GP as I feel they don't do anything proactively, although they have seemed happy to follow the guidance I am given here. My blood test results are below. I have been prescribed Vitamin
Hello, I was diagnosed in August and really benefitted from advice from people here. I am lacking confidence in the GP as I feel they don't do anything proactively, although they have seemed happy to follow the guidance I am given here. My blood test results are below. I have been prescribed Vitamin
Tired2022
in
Thyroid UK
2 years ago
Comments please on recent blood tests. Thank you very much
Hello everyone, I did some blood tests this week, and here are the readings. I' m on 75mcg thyroxine a day, and take supplements for B12, vitamin D&K2. I have been on T4 for about 3 years. I've been on higher doses of T4 (up to 150mcg) but it only lowered my TSH without making a significant difference
Hello everyone, I did some blood tests this week, and here are the readings. I' m on 75mcg thyroxine a day, and take supplements for B12, vitamin D&K2. I have been on T4 for about 3 years. I've been on higher doses of T4 (up to 150mcg) but it only lowered my TSH without making a significant difference
lh22
in
Thyroid UK
2 years ago
Tauroursodeoxycholic acid: a potential therapeutic tool in neurodegenerative diseases 2022 (TUDCA)
Furthermore, data from phase II clinical trials have shown TUDCA to be safe and a potential disease-modifier in
ALS
.
ALS
is the first neurodegenerative disease being treated with hydrophilic bile acids.
Furthermore, data from phase II clinical trials have shown TUDCA to be safe and a potential disease-modifier in
ALS
.
ALS
is the first neurodegenerative disease being treated with hydrophilic bile acids.
Bolt_Upright
in
Cure Parkinson's
2 years ago
My Liver on Kratom....
Hi all.....this is my first post after years of following this invaluable forum. I've been waiting to post until I had something positive to contribute but unfortunately, I'm compelled to share some not so great news now regarding Kratom after reading some recent posts supporting its use. First I would
Hi all.....this is my first post after years of following this invaluable forum. I've been waiting to post until I had something positive to contribute but unfortunately, I'm compelled to share some not so great news now regarding Kratom after reading some recent posts supporting its use. First I would
flobbest
in
Restless Legs Syndrome
2 years ago
Five Common Supplements That Have Shown Benefit In Glioblastoma Studies
This combination of preclinical effectiveness and proven safety in humans suggests that high-dose melatonin is suitable for clinical trials aimed at neuroprotection through antioxidation in
ALS
.
This combination of preclinical effectiveness and proven safety in humans suggests that high-dose melatonin is suitable for clinical trials aimed at neuroprotection through antioxidation in
ALS
.
chartist
in
Glioblastoma Support
1 year ago
Omeprazole concerns
I have
ALS
and a bad posture and I was starting to have indigestion and coughing, but no acid reflux. My GP put me on 20mg omeprazole over a year ago and I'm now beginning to question this. It seems to have potential side effects eg numbness in the hands and feet, which I have quite badly now.
I have
ALS
and a bad posture and I was starting to have indigestion and coughing, but no acid reflux. My GP put me on 20mg omeprazole over a year ago and I'm now beginning to question this. It seems to have potential side effects eg numbness in the hands and feet, which I have quite badly now.
Louise64A
in
PMRGCAuk
2 years ago
ALT/SGPT
Any idea why this test went for 34 to 103 ? I had blood work done yesterday and my doctor didn’t say anything about this. This test is usually in the low to mid 30s for the last year. Thanks you you all and keep a good attitude, they say that’s half of the battle! Hugs!!
Any idea why this test went for 34 to 103 ? I had blood work done yesterday and my doctor didn’t say anything about this. This test is usually in the low to mid 30s for the last year. Thanks you you all and keep a good attitude, they say that’s half of the battle! Hugs!!
Sharon0122
in
SHARE Metastatic Breast Cancer
2 years ago
Is your Parkinson's diagnosis really idiopathic? Or is there an underlying cancer/autoimmune disorder?
There is an intimate link between Neurodegenerative disorders (Parkinson's/Dementia/
ALS
), autoimmune disorders and cancer. This isn't new information for neurologists, oncologists and immunologists or even general practitioners.
There is an intimate link between Neurodegenerative disorders (Parkinson's/Dementia/
ALS
), autoimmune disorders and cancer. This isn't new information for neurologists, oncologists and immunologists or even general practitioners.
SilentEchoes
in
Cure Parkinson's
2 years ago
A good-news story from The Guardian about Tofersen, an antisense oligonucleotide for ALS/MND (i.e. not for PD)
"The FDA is considering an application to license the drug and it is being offered to patients in the UK under an early access programme." Experimental drug shows signs of slowing motor neurone disease: https://www.theguardian.com/society/2022/sep/21/experimental-drug-slowing-motor-neurone-disease?
"The FDA is considering an application to license the drug and it is being offered to patients in the UK under an early access programme." Experimental drug shows signs of slowing motor neurone disease: https://www.theguardian.com/society/2022/sep/21/experimental-drug-slowing-motor-neurone-disease?
jeffreyn
in
Cure Parkinson's
2 years ago
Waiting part tres
No quesions really. Radiation down 2 weeks ago to left hip region helped but gut messed up now. Some high intestinal/stomach bleeding (due to what?) caused a couple black stools and dropped Hb a bit, but cleared up now. Case of GERG has joined in. Alk phos at 110ish for last 2 months, PSA at 35 now.
No quesions really. Radiation down 2 weeks ago to left hip region helped but gut messed up now. Some high intestinal/stomach bleeding (due to what?) caused a couple black stools and dropped Hb a bit, but cleared up now. Case of GERG has joined in. Alk phos at 110ish for last 2 months, PSA at 35 now.
RunThru
in
Advanced Prostate Cancer
2 years ago
Does it sound like cmt or a neurodegenerative desease? My health anxiety is driving me crazy. Please help.
She said that I don't seem to have any peripheral neuropathy and I very very probably don't have
ALS
nor CMT. My sleep is also quite bad. I don’t sleep enough.
She said that I don't seem to have any peripheral neuropathy and I very very probably don't have
ALS
nor CMT. My sleep is also quite bad. I don’t sleep enough.
Cupcakelover23
in
Charcot-Marie-Tooth UK
1 year ago
SOC options have run out, PSMA negative, declining health - what's next?
My husband was diagnosed with high grade prostate cancer in 4/06 Gleason 4+3=7 in 12/12 cores with 90 to 100% involvement of the tissue cores. His original clinical staging was T2c versus T3. PSA at that time was 6.4. -First treatment was brachytherapy and IMRT. Undetectable PSA never reached. -Recurrance
My husband was diagnosed with high grade prostate cancer in 4/06 Gleason 4+3=7 in 12/12 cores with 90 to 100% involvement of the tissue cores. His original clinical staging was T2c versus T3. PSA at that time was 6.4. -First treatment was brachytherapy and IMRT. Undetectable PSA never reached. -Recurrance
Hidden
in
Advanced Prostate Cancer
2 years ago
looking for someone to look at my test results please.
hi, I have been a member of tge pernicious anemia site for my years and put my first post on today. Someone suggested I should also put in on this site as you are all so knowledgeable and helpful. Apologies this is a long post. I have copied what I put on the other site Hi, I am a long time member
hi, I have been a member of tge pernicious anemia site for my years and put my first post on today. Someone suggested I should also put in on this site as you are all so knowledgeable and helpful. Apologies this is a long post. I have copied what I put on the other site Hi, I am a long time member
Milsean
in
Thyroid UK
2 years ago
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