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D-bifunctional protein (DBP) deficiency
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ALC is still going up
Well, today I had another CBC. My ALC continues to go up consistently at each 2 week check and I will be seeing my onco at the beginning of Feb. In addition to the rising alc, test shows a few other little changes that i don't fully understand -- my MCV is now reading high (99.50) and my MCHC is low
Well, today I had another CBC. My ALC continues to go up consistently at each 2 week check and I will be seeing my onco at the beginning of Feb. In addition to the rising alc, test shows a few other little changes that i don't fully understand -- my MCV is now reading high (99.50) and my MCHC is low
Moonmyst
in
CLL Support
2 years ago
dbs and massage chairs
THis might sound trival but I cannot find a good full massage chair which is pacemaker /DBS friendly. They all exclude people with these devices. Same goes for vibration plates. I get it, they both emit electromagnetic fields. So does my microwave and phone. Any suggestions for Massage chairs (Europe
THis might sound trival but I cannot find a good full massage chair which is pacemaker /DBS friendly. They all exclude people with these devices. Same goes for vibration plates. I get it, they both emit electromagnetic fields. So does my microwave and phone. Any suggestions for Massage chairs (Europe
Curious_Fred
in
Cure Parkinson's
1 year ago
15-Year Subthalamic Deep Brain Stimulation outcome in a Parkinson's disease patient with Parkin gene mutation: a case report
https://pubmed.ncbi.nlm.nih.gov/37032388 Case report: In 1993, a 39-year-old male was diagnosed with PD after the onset of resting tremor. Levodopa was started, and during the following 10 years, he reported good motor symptoms control, with only mild modification of levodopa intake and pramipexole
https://pubmed.ncbi.nlm.nih.gov/37032388 Case report: In 1993, a 39-year-old male was diagnosed with PD after the onset of resting tremor. Levodopa was started, and during the following 10 years, he reported good motor symptoms control, with only mild modification of levodopa intake and pramipexole
Hidden
in
Cure Parkinson's
1 year ago
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Brain iron vs Blood iron
Has anyone read that in RLS patients brain iron can be lower than indicated by blood measurements? I read a study out of Quebec about the gene we carry causing a malformation in the brain that makes it harder to uptake the iron.... So blood levels are not accurate in showing brain anemia. My RLS totally
Has anyone read that in RLS patients brain iron can be lower than indicated by blood measurements? I read a study out of Quebec about the gene we carry causing a malformation in the brain that makes it harder to uptake the iron.... So blood levels are not accurate in showing brain anemia. My RLS totally
SkyCop
in
Restless Legs Syndrome
2 years ago
Vit B and Ferritin levels
So had my FBC, Vit B and "iron" tests yesterday. Turns out they only tested Ferritin for iron, but I've got a full anaemia panel with MMH to complete this morning for a full picture. Now to play the waiting game and see what the GP decides to tell me 🙄 Edit: had a text from my surgery to let me know
So had my FBC, Vit B and "iron" tests yesterday. Turns out they only tested Ferritin for iron, but I've got a full anaemia panel with MMH to complete this morning for a full picture. Now to play the waiting game and see what the GP decides to tell me 🙄 Edit: had a text from my surgery to let me know
dizzyarmadillo
in
Thyroid UK
2 years ago
Deep Brain Stimulation
Does anyone have recent personal experience of DBS for tremors? How successful was it as a treatment? Anecdotal information I can probably research for myself. Thank you. I have Cerabellar Ataxia.
Does anyone have recent personal experience of DBS for tremors? How successful was it as a treatment? Anecdotal information I can probably research for myself. Thank you. I have Cerabellar Ataxia.
Ostap
in
Ataxia UK
1 year ago
Slightly raised ferritin, any advice please
Iron 31.0 (5.8-34.5)TIBC 51.3 (45-81) UIBC 20.6 (24.2-70.1) Transferring saturation 60.6 (20-50) Ferritin 203 (13-150) Crp 4.15 (0-5) Can I ask your advice please? As advised on here a few months ago I rechecked my iron levels in December, hoping to have some reason for continuing ectopic heartbeats.
Iron 31.0 (5.8-34.5)TIBC 51.3 (45-81) UIBC 20.6 (24.2-70.1) Transferring saturation 60.6 (20-50) Ferritin 203 (13-150) Crp 4.15 (0-5) Can I ask your advice please? As advised on here a few months ago I rechecked my iron levels in December, hoping to have some reason for continuing ectopic heartbeats.
Baggiesfan
in
Thyroid UK
2 years ago
iron related help
hi there I just received my blood test results and my Haemoglobin, RBC and HCT were slightly lower than guidelines but my full iron panel came back in range. Spoke to GP who said she isn’t worried and to eat iron rich food and a multivitamin & to test again in 3 months. My ferritin is 49 but rest of
hi there I just received my blood test results and my Haemoglobin, RBC and HCT were slightly lower than guidelines but my full iron panel came back in range. Spoke to GP who said she isn’t worried and to eat iron rich food and a multivitamin & to test again in 3 months. My ferritin is 49 but rest of
Racheeeel78
in
Thyroid UK
2 years ago
blood test results help! Haemoglobin, RBC low but iron in range?
hi there I just received my blood test results and my Haemoglobin, RBC and HCT were slightly lower than guidelines but my full iron panel came back in range. Spoke to GP who said she isn’t worried and to eat iron rich food and a multivitamin & to test again in 3 months. My ferritin is 49 but rest of
hi there I just received my blood test results and my Haemoglobin, RBC and HCT were slightly lower than guidelines but my full iron panel came back in range. Spoke to GP who said she isn’t worried and to eat iron rich food and a multivitamin & to test again in 3 months. My ferritin is 49 but rest of
Racheeeel78
in
Pernicious Anaemia Society
2 years ago
Video- a personal story
A moving video diary of one young man’s Parkinson’s journey to DBS. Take a look, it is well worth the time. https://m.youtube.com/watch?v=ZGcSGWenvA8
A moving video diary of one young man’s Parkinson’s journey to DBS. Take a look, it is well worth the time. https://m.youtube.com/watch?v=ZGcSGWenvA8
Buckholt
in
Cure Parkinson's
1 year ago
long-term effects of deepbrainstimulation on brain activity
Researchers led by KBI_UHN Drs. Robert Chen and Ghazaleh Darmani shed light on the long-term effects of #deepbrainstimulation on brain activity in people with #parkinsondisease, laying the groundwork for improved therapies The team discovered that deep brain stimulation increased aperiodic beta activity
Researchers led by KBI_UHN Drs. Robert Chen and Ghazaleh Darmani shed light on the long-term effects of #deepbrainstimulation on brain activity in people with #parkinsondisease, laying the groundwork for improved therapies The team discovered that deep brain stimulation increased aperiodic beta activity
Hidden
in
Cure Parkinson's
1 year ago
High Dose Niacin (Nicotinic Acid) and Hashimoto's?
Update 01/22/2023: I just learned there is an increased risk of diabetes on niacin therapy: https://heart.bmj.com/content/102/3/198 This study was based on people taking Niacin for cardiovascular reasons, which I think would be dosed at 500 to 6000 mg a day: https://www.mayoclinic.org/drugs-supplements
Update 01/22/2023: I just learned there is an increased risk of diabetes on niacin therapy: https://heart.bmj.com/content/102/3/198 This study was based on people taking Niacin for cardiovascular reasons, which I think would be dosed at 500 to 6000 mg a day: https://www.mayoclinic.org/drugs-supplements
Bolt_Upright
in
Thyroid UK
2 years ago
Ferinject to correct iron deficiency and strange clicking in throat when swollowing
So I had very bad iron deficiency anemia for some time now. Iron tablets did not work well. So an internist decided to give me ferinject 1000 to correct it. I had 30 minutes of iron infusion and I was fine. Then after couple of days my throat was swollen and I start to have strange sensations. It's like
So I had very bad iron deficiency anemia for some time now. Iron tablets did not work well. So an internist decided to give me ferinject 1000 to correct it. I had 30 minutes of iron infusion and I was fine. Then after couple of days my throat was swollen and I start to have strange sensations. It's like
NatDeer
in
Thyroid UK
2 years ago
Iron Infusion in the U.S.
Hello wise RLS colleagues!Has anyone had Medicare pay for an iron infusion for their RLS? I meet the RLS guidelines for iron infusion, but I have been told that Medicare will not cover it because I am not anemic. If it was covered, can you share with me what code was used? I have had RLS for 20 years
Hello wise RLS colleagues!Has anyone had Medicare pay for an iron infusion for their RLS? I meet the RLS guidelines for iron infusion, but I have been told that Medicare will not cover it because I am not anemic. If it was covered, can you share with me what code was used? I have had RLS for 20 years
Qalba
in
Restless Legs Syndrome
2 years ago
DBS and cognition
Does having a diagnosis of "major neurocognitive disorder"-- a DSM diagnosis, usually disqualify someone for DBS? Is it dependent on other factors?
Does having a diagnosis of "major neurocognitive disorder"-- a DSM diagnosis, usually disqualify someone for DBS? Is it dependent on other factors?
Agnes1234
in
Cure Parkinson's
1 year ago
Results
Can anyone make sense of these results for me please? I was ferritin level 6ugL (23-300) in September. It has rose which I'm happy about but I'm still incredibly symptomatic, I don't really understand blood test readings, can anyone shed some light on it? Serum Ferritin level (XE24r) 26ug/L (23-300
Can anyone make sense of these results for me please? I was ferritin level 6ugL (23-300) in September. It has rose which I'm happy about but I'm still incredibly symptomatic, I don't really understand blood test readings, can anyone shed some light on it? Serum Ferritin level (XE24r) 26ug/L (23-300
Pheebs93
in
Pernicious Anaemia Society
2 years ago
CAPSULOTOMY + OTHER OPTIONS
Hi there! I'm quite new here, but I'm CONVINCED of how important this chat is for all of us as OCD sufferers. There are many of us here who are struggling with OCD symptoms every day. I've been following various comments in this chat. And now, I'm encouraged to write this short contribution. As many
Hi there! I'm quite new here, but I'm CONVINCED of how important this chat is for all of us as OCD sufferers. There are many of us here who are struggling with OCD symptoms every day. I've been following various comments in this chat. And now, I'm encouraged to write this short contribution. As many
languageteacher
in
My OCD Community
1 year ago
Treating anaemia alongside thyroid medication
Having been on T3 only for about 8 months, I have made some massive strides in terms of my general health. Most of the symptoms that had me at my absolute lowest ebb, have gone. However, if one remains it is a general feeling of weakness. I used to weight lift 4 - 5 times a week before thyroid illness
Having been on T3 only for about 8 months, I have made some massive strides in terms of my general health. Most of the symptoms that had me at my absolute lowest ebb, have gone. However, if one remains it is a general feeling of weakness. I used to weight lift 4 - 5 times a week before thyroid illness
JonnyA
in
Thyroid UK
2 years ago
Could anyone help me with my results please
18/11/22 Serum iron 24 .4 range 5.8-34.5 Transferrin 2.34 range 2-3.6 Unsat binding capacity 59 range 50-90 % transf sat 41% range 16-40% Haemoglobin 138 range 120-160 RBC 4.49 range 4.1-5.1 RDW 12 2% range 11.5-15.7 MCV 93.1 range 80-100 MCH 330 range 30.7 range 27-33 MCHC 30.7 range 320-369
18/11/22 Serum iron 24 .4 range 5.8-34.5 Transferrin 2.34 range 2-3.6 Unsat binding capacity 59 range 50-90 % transf sat 41% range 16-40% Haemoglobin 138 range 120-160 RBC 4.49 range 4.1-5.1 RDW 12 2% range 11.5-15.7 MCV 93.1 range 80-100 MCH 330 range 30.7 range 27-33 MCHC 30.7 range 320-369
Paula1710
in
Pernicious Anaemia Society
2 years ago
DBS and Sinemet
I had the DBS surgery last October. After DBS, Sinemet made my PD symptoms worse...especially balance (It's like I am constantly falling forward and my legs are trying to keep up). I told my neurologist about it and she thought is odd that Sinemet would do that. I feel better without the Sinemet.
I had the DBS surgery last October. After DBS, Sinemet made my PD symptoms worse...especially balance (It's like I am constantly falling forward and my legs are trying to keep up). I told my neurologist about it and she thought is odd that Sinemet would do that. I feel better without the Sinemet.
DeanGreen
in
Cure Parkinson's
1 year ago
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