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Experiences with
D-bifunctional protein (DBP) deficiency
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Anyone find C/L ineffective?
My husband has never been helped with any meds. Has been on carbo/levo 25-100 6 per day for over a year. He has no "on time or off time". Dr. wants him to go to 8 but I don't understand why since we do not see any change at all. He is now on B1 (Dr. C. said to stay on meds, probably because he doesn't
My husband has never been helped with any meds. Has been on carbo/levo 25-100 6 per day for over a year. He has no "on time or off time". Dr. wants him to go to 8 but I don't understand why since we do not see any change at all. He is now on B1 (Dr. C. said to stay on meds, probably because he doesn't
Basih101
in
Cure Parkinson's
6 years ago
DBS SURGERY
hi I have cervical dystonia i had DBS surgery in 2012 I would love to write about my experiences and promise I will do later but I have a question I charge my battery every 48 hours and will be having keyhole surgery on my knee very shortly I need to know if I can safely turn off the battery while I
hi I have cervical dystonia i had DBS surgery in 2012 I would love to write about my experiences and promise I will do later but I have a question I charge my battery every 48 hours and will be having keyhole surgery on my knee very shortly I need to know if I can safely turn off the battery while I
belle2018
in
Dystonia Society
6 years ago
Shortness of breath
Shortness of breath I’m 76 years old diagnosed six years ago but first symptoms 25 years ago with loss of smell. At that time they didn’t put it together that it may be the beginning of Parkinson’s disease. I am on pretty heavy doses of Sinemet, having to take two tablets of 25/100 every two hours
Shortness of breath I’m 76 years old diagnosed six years ago but first symptoms 25 years ago with loss of smell. At that time they didn’t put it together that it may be the beginning of Parkinson’s disease. I am on pretty heavy doses of Sinemet, having to take two tablets of 25/100 every two hours
martinstevens1
in
Cure Parkinson's
6 years ago
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Thiamine question
I have been taking 2Gm Thiamine twice a day for about 1 month now. I have had DBS approx 10 yrs ago. I was diagnosed with PD about 20 years ago, fortunately the only symptoms I have are balance issues and bradykinesia. My question is; Does the length of time taking Thiamine have any correlation with
I have been taking 2Gm Thiamine twice a day for about 1 month now. I have had DBS approx 10 yrs ago. I was diagnosed with PD about 20 years ago, fortunately the only symptoms I have are balance issues and bradykinesia. My question is; Does the length of time taking Thiamine have any correlation with
Dwest022
in
Cure Parkinson's
6 years ago
Fixin to get DBS and very nervous
Ive never done anything like sharing my issues with strangers but .pardon my punctuation ,it usually stinks ..ive had Parkinson's now for just over 4 years .im 44 ,I just got finished jumping through a ton of hoops and finally ,i go in for dbs surgery on the 22nd of Aug . Basically, im scared ,im not
Ive never done anything like sharing my issues with strangers but .pardon my punctuation ,it usually stinks ..ive had Parkinson's now for just over 4 years .im 44 ,I just got finished jumping through a ton of hoops and finally ,i go in for dbs surgery on the 22nd of Aug . Basically, im scared ,im not
Ou812
in
Cure Parkinson's
6 years ago
Bad Role Model
-Potential trigger warning- My very supportive grandfather (the only member of my childhood family who’s still in my life), was telling me yesterday that his good friend’s daughter tried to hang herself the other day, but the belt broke. Apparently she’s a young teenager, and she sees a therapist for
-Potential trigger warning- My very supportive grandfather (the only member of my childhood family who’s still in my life), was telling me yesterday that his good friend’s daughter tried to hang herself the other day, but the belt broke. Apparently she’s a young teenager, and she sees a therapist for
ZenGiraffe
in
Anxiety and Depression Support
6 years ago
DBS programming specialist in Jackson, MS
Does anyone know if a good movement disorder specialist in Jackson Mississippi, that can do DBS programming. My search have brought up Merit Health Hospital.
Does anyone know if a good movement disorder specialist in Jackson Mississippi, that can do DBS programming. My search have brought up Merit Health Hospital.
CplParkinson
in
Cure Parkinson's
6 years ago
Too much B12?
Hi all, I wonder if anyone else has had a similar problem? Firstly, I don't have pernicious anaemia. Last year I had awful GI issues and unexplained folic acid and iron deficiency anaemia and borderline low B12. I also have mild chronic kidney disease which, according to the doctors, is not connected
Hi all, I wonder if anyone else has had a similar problem? Firstly, I don't have pernicious anaemia. Last year I had awful GI issues and unexplained folic acid and iron deficiency anaemia and borderline low B12. I also have mild chronic kidney disease which, according to the doctors, is not connected
Julesboz
in
Pernicious Anaemia Society
6 years ago
Iron deficiency?
Please help advise if I have iron deficiency I am to receive iron infusion next week thankyou Ferritin 31 (30 - 400) MCV 78.1 (80 - 98) MCHC 375 (310 - 350) MCH 28 (28 - 32) RBC 4.44 (3.80 - 5.80) WBC 4.31 (4.00 - 11.00) PLATELET COUNT 250 (140 - 400) HAEMOGLOBIN ESTIMATION 114 (110 - 150) HAEMATOCRIT
Please help advise if I have iron deficiency I am to receive iron infusion next week thankyou Ferritin 31 (30 - 400) MCV 78.1 (80 - 98) MCHC 375 (310 - 350) MCH 28 (28 - 32) RBC 4.44 (3.80 - 5.80) WBC 4.31 (4.00 - 11.00) PLATELET COUNT 250 (140 - 400) HAEMOGLOBIN ESTIMATION 114 (110 - 150) HAEMATOCRIT
Azure1985
in
Thyroid UK
6 years ago
DBS
Hello! Has anyone done DBS? Would be curious to know how it went, if things got better and for how long, etc. Any post surgery info would be super helpful! Thank you!
Hello! Has anyone done DBS? Would be curious to know how it went, if things got better and for how long, etc. Any post surgery info would be super helpful! Thank you!
luba1
in
Cure Parkinson's
6 years ago
Brain Death and recovery with Deep Brain Stimulation
In March 1983 I was a victim of a Hit and deny responsibility attack by an insane motorist who was driving way too fast. My brain apparently had died and the NHS staff at Plymouth Freedom Fields hospital were about to turn off the life support machine. Only thanks to the intervention of my loving parents
In March 1983 I was a victim of a Hit and deny responsibility attack by an insane motorist who was driving way too fast. My brain apparently had died and the NHS staff at Plymouth Freedom Fields hospital were about to turn off the life support machine. Only thanks to the intervention of my loving parents
Bright2018
in
Headway
6 years ago
RECENT BLOOD TESTS RESULTS
Hello everyone, Am seeing GP on Monday afternoon so would appreciate any comments regarding my latest results (12 June 2018), in order to be able to get the most from the consultation. Am rather concerned about my Free T3 level.... as well as haemoglobin, serum iron and transferrin saturation... About
Hello everyone, Am seeing GP on Monday afternoon so would appreciate any comments regarding my latest results (12 June 2018), in order to be able to get the most from the consultation. Am rather concerned about my Free T3 level.... as well as haemoglobin, serum iron and transferrin saturation... About
JGBH
in
Thyroid UK
6 years ago
Why would B12 plummet so quickly?
Hi all, I've just received my latest set of blood results and I'm a bit puzzled, I wonder if any of you lovely people can help. Currently on Ferrous Fumarate 2 x daily (take vith Vit C tablet) and 1 x VitD3 3200 iu (taken with K2) 15/6/18 TSH 5.95 mu/L 0.35-5.0 (was 5.84 in May but was higher in
Hi all, I've just received my latest set of blood results and I'm a bit puzzled, I wonder if any of you lovely people can help. Currently on Ferrous Fumarate 2 x daily (take vith Vit C tablet) and 1 x VitD3 3200 iu (taken with K2) 15/6/18 TSH 5.95 mu/L 0.35-5.0 (was 5.84 in May but was higher in
MelonJ
in
Pernicious Anaemia Society
6 years ago
Well got my results back and I guess this explains alot 🤦🏼♀️
Sorry for the lighting, if you cant see it it says 96.6 for parietal cell antibody range 0.0 - 24.9 Thank you for pointing me in the right direction. Im not sure if this qualifies me as auto immune gastritis but thankfully we have discovered this.
Sorry for the lighting, if you cant see it it says 96.6 for parietal cell antibody range 0.0 - 24.9 Thank you for pointing me in the right direction. Im not sure if this qualifies me as auto immune gastritis but thankfully we have discovered this.
JennaShi
in
Thyroid UK
6 years ago
DBS
hi i have had dbs but still cant walk without meds any help ??
hi i have had dbs but still cant walk without meds any help ??
mckchart
in
Cure Parkinson's
6 years ago
Problems with B1
My husband started taking B1 as recommended on this website but had to give it up after three weeks because his health deteriorated. We were abroad on holiday at the time and he fell at least five times, one quite badly busting his nose and lips. When we got home he stopped taking it as Dr Constantini
My husband started taking B1 as recommended on this website but had to give it up after three weeks because his health deteriorated. We were abroad on holiday at the time and he fell at least five times, one quite badly busting his nose and lips. When we got home he stopped taking it as Dr Constantini
JeanieBeanie
in
Cure Parkinson's
6 years ago
DBS or No DBS : Surevy https://bit.ly/2Mxgk84 results
Five people responded and I am grateful for the time and willingness to share information. Below is a summary of the results: >>>> country of residency Not surprisingly the bulk of the participants live in the United States given that survey was announced here on this website. Only one participant
Five people responded and I am grateful for the time and willingness to share information. Below is a summary of the results: >>>> country of residency Not surprisingly the bulk of the participants live in the United States given that survey was announced here on this website. Only one participant
Xabojuro2
in
Cure Parkinson's
6 years ago
Pilot study finds that DBS slows the progression of resting tremor in early-stage PD
“The field of DBS therapy for Parkinson’s disease is moving toward earlier stages of treatment ...” ParkinsonsNewsToday article: https://parkinsonsnewstoday.com/2018/07/05/dbs-shows-potential-to-ease-tremors-in-early-stage-parkinsons-patients-in-pilot-study/ Research paper (not
“The field of DBS therapy for Parkinson’s disease is moving toward earlier stages of treatment ...” ParkinsonsNewsToday article: https://parkinsonsnewstoday.com/2018/07/05/dbs-shows-potential-to-ease-tremors-in-early-stage-parkinsons-patients-in-pilot-study/ Research paper (not
jeffreyn
in
Cure Parkinson's
6 years ago
Scleraderma / HHT
Good evening all. Has anybody been diagnosed with systemic sclerosis,scleraderma and HHT, hereditary hemorrhagic telangiectasia? The reason I'm asking is its possible that I have both these diseases, I'm currently awaiting for an appointment for a brain scan for Avm.s.
Good evening all. Has anybody been diagnosed with systemic sclerosis,scleraderma and HHT, hereditary hemorrhagic telangiectasia? The reason I'm asking is its possible that I have both these diseases, I'm currently awaiting for an appointment for a brain scan for Avm.s.
Joanne_Evans030365
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Guys I need your urgent help please!!!!
I just recently did blood test and it says Heamoglobin estimation 117 g/L (120-150) and Heamatocrit 0.359L/L ( 0.360-0.460) and it says make an appoitment to see GP what does it mean ? Is it something to do with iron ? This is from my full blood count results I wrote down two which are standing out
I just recently did blood test and it says Heamoglobin estimation 117 g/L (120-150) and Heamatocrit 0.359L/L ( 0.360-0.460) and it says make an appoitment to see GP what does it mean ? Is it something to do with iron ? This is from my full blood count results I wrote down two which are standing out
Ari3
in
Thyroid UK
6 years ago
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