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Experiences with
D-bifunctional protein (DBP) deficiency
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Have you had DBS please share experience
What has been good, what hard? Has your speech been affected? R u still on medication? How long do the benefits last? Please share your experience.
What has been good, what hard? Has your speech been affected? R u still on medication? How long do the benefits last? Please share your experience.
powerfemale
in
Cure Parkinson's
4 years ago
Coronavirus
Am I at hi risk with the Coronavirus. And I have DBS fitted
Am I at hi risk with the Coronavirus. And I have DBS fitted
Gareth78
in
Dystonia Society
4 years ago
Light Interview
Dear Ladies. I have been to light Sheffield today to offer my services. They said they don’t want me to do peer support work at the moment, whilst I am getting counselling myself. She has asked me whether I want to become an ambassador and do some admin work for them. I have taken all my qualifications
Dear Ladies. I have been to light Sheffield today to offer my services. They said they don’t want me to do peer support work at the moment, whilst I am getting counselling myself. She has asked me whether I want to become an ambassador and do some admin work for them. I have taken all my qualifications
Poulson
in
Action on Postpartum Psychosis
4 years ago
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Best Iron Supplement to up Iron & Ferritin levels
Hi My Iron and Ferritin are always on the low side. Recently my iron was 13, 3 months before it was 8 and ferritin never seems to go above 30. I am currently on 1 ferrous fumarate daily 210mg, but this never seems to increase levels higher. I can't tolerate two a day as I get a very bad stomach. I have
Hi My Iron and Ferritin are always on the low side. Recently my iron was 13, 3 months before it was 8 and ferritin never seems to go above 30. I am currently on 1 ferrous fumarate daily 210mg, but this never seems to increase levels higher. I can't tolerate two a day as I get a very bad stomach. I have
mistygrey
in
Pernicious Anaemia Society
4 years ago
Can you help with iron panel blood test please
Ferritin. 67. Range 30-470 RBC. 3.7. 3.80-5.30 Haemoglobin 117. 120-150 Haematacrit 0.36. 0.37-0.45 I had been told in the past it was anaemia of a chronic illness. But with my ferritin level where it is surely I could improve this with some treatment. (
Ferritin. 67. Range 30-470 RBC. 3.7. 3.80-5.30 Haemoglobin 117. 120-150 Haematacrit 0.36. 0.37-0.45 I had been told in the past it was anaemia of a chronic illness. But with my ferritin level where it is surely I could improve this with some treatment. (
Gcart
in
Thyroid UK
4 years ago
Are iron injections available privately or via the Nhs in the UK
Hi, gp's and hospital Dr's have stated iron injections are no longer available in the UK. Wondered if this is true for private? I believe i may need them as i have previously been diagnosed as iron deficient. However ferritin levels high at the time of diagnoses. I suffered brain fog, exhaustion and
Hi, gp's and hospital Dr's have stated iron injections are no longer available in the UK. Wondered if this is true for private? I believe i may need them as i have previously been diagnosed as iron deficient. However ferritin levels high at the time of diagnoses. I suffered brain fog, exhaustion and
Karen154
in
Thyroid UK
4 years ago
DBS for non tremor
Hi all. An acquaintance of mine who has the wonderful disease was told by their PD nurse that DBS wasn’t really an option as he had no tremor. I’m a little surprised at this remark and wondered what the community thinks about this. Thanks and best wishes 😊
Hi all. An acquaintance of mine who has the wonderful disease was told by their PD nurse that DBS wasn’t really an option as he had no tremor. I’m a little surprised at this remark and wondered what the community thinks about this. Thanks and best wishes 😊
jeeves19
in
Cure Parkinson's
4 years ago
DBS truly reversible?
Hi all, In all the DBS vs FUS posts the argument is that DBS is reversible. The two people I know who had DBS pulled are in horrible shape - one had a stroke from it. I also know of a number of people where DBS made them worse or did nothing. So for my own knowledge - do you know people where it has
Hi all, In all the DBS vs FUS posts the argument is that DBS is reversible. The two people I know who had DBS pulled are in horrible shape - one had a stroke from it. I also know of a number of people where DBS made them worse or did nothing. So for my own knowledge - do you know people where it has
lenamm
in
Cure Parkinson's
4 years ago
Ferrous Sulfate
So I finally got my blood results. Dr hadn’t added transferrin saturation to the test but I managed to get the nurse to add it when I went in for the bloods. Ferritin 91 Transferrin saturation 19.9 Now on 400mg of iron daily & a referral to movement clinic. Are there likely to be options to help me get
So I finally got my blood results. Dr hadn’t added transferrin saturation to the test but I managed to get the nurse to add it when I went in for the bloods. Ferritin 91 Transferrin saturation 19.9 Now on 400mg of iron daily & a referral to movement clinic. Are there likely to be options to help me get
nosleep1969
in
Restless Legs Syndrome
4 years ago
DBS and meds
DBS and meds. I can’t get my meds correct after my first DBS programming. I used to take stalevo 200 every 2 1/2 hours. The doctor got me on rytary now two 245 mg capsules then following my old schedule. Now I’m overdosing. Who’s got DBS and how much meds they take.
DBS and meds. I can’t get my meds correct after my first DBS programming. I used to take stalevo 200 every 2 1/2 hours. The doctor got me on rytary now two 245 mg capsules then following my old schedule. Now I’m overdosing. Who’s got DBS and how much meds they take.
dfasci
in
Cure Parkinson's
4 years ago
Ok, I'm bad. I just turned 63 and my home general DR. insists on a colonoscopy. I have never.... I mean you know "exit only" had one.
My question is: Should I be concerned about my DBS considering they are giving me a "party girl" drip? I tolerated Cateract procedure 5 years ago w/o any concerns but the dr. says this will take a little longer and I am a few years further into noticeable progressions than I was at that time. For
My question is: Should I be concerned about my DBS considering they are giving me a "party girl" drip? I tolerated Cateract procedure 5 years ago w/o any concerns but the dr. says this will take a little longer and I am a few years further into noticeable progressions than I was at that time. For
Pelley
in
Cure Parkinson's
4 years ago
Dangers of b12
I read this on web MD - is it correct? Vitamin B12 is LIKELY SAFE for most people when taken by mouth, applied to the skin, taken through the nose, administered as a shot, or injected into the vein (by IV). Vitamin B12 is considered safe, even in large doses. Mild itching has been reported in one person
I read this on web MD - is it correct? Vitamin B12 is LIKELY SAFE for most people when taken by mouth, applied to the skin, taken through the nose, administered as a shot, or injected into the vein (by IV). Vitamin B12 is considered safe, even in large doses. Mild itching has been reported in one person
Alfabeta
in
Pernicious Anaemia Society
4 years ago
Feraheme / new acceptable ferritin levels
FERAHEME: is definitely good/new recommendation on iron ferritin for RLS Dr. B's response. On Wed, Jan 22, 2020 at 9:59 PM <somno@verizon.net> wrote: The community of truly good RLS doctors is very small and we all know each other fairly well. MY Dr. *** is an excellent RLS doctor and his advice and
FERAHEME: is definitely good/new recommendation on iron ferritin for RLS Dr. B's response. On Wed, Jan 22, 2020 at 9:59 PM <somno@verizon.net> wrote: The community of truly good RLS doctors is very small and we all know each other fairly well. MY Dr. *** is an excellent RLS doctor and his advice and
tinabuglaw
in
Restless Legs Syndrome
4 years ago
When can you not get DBS?
When I went for my last neurology visit right before Christmas, it was suggested that I consider DBS... I was taken aback, because I can still get good results with c/l (although since my PD honeymoon ended it has gotten a lot harder), and I thought I would have a lot more time until I needed to consider
When I went for my last neurology visit right before Christmas, it was suggested that I consider DBS... I was taken aback, because I can still get good results with c/l (although since my PD honeymoon ended it has gotten a lot harder), and I thought I would have a lot more time until I needed to consider
Hidden
in
Cure Parkinson's
4 years ago
Anyone on Gazyva and Venetaklax combo?
My husband got off Imbruvica to switch to Gazyva and Venetaklax combo as Imbruv stopped working and he got anemia as hemoglobin was very low 7.1. Then he had to get 2 blood transfusions within 10 days and hemog is now a 9. Has anyone experienced low neutriphils, platelts, and hemoglobin while on Gazyva
My husband got off Imbruvica to switch to Gazyva and Venetaklax combo as Imbruv stopped working and he got anemia as hemoglobin was very low 7.1. Then he had to get 2 blood transfusions within 10 days and hemog is now a 9. Has anyone experienced low neutriphils, platelts, and hemoglobin while on Gazyva
Anavadya
in
CLL Support
4 years ago
DBS revision
I’m curious if anyone has experience or knowledge of the new generation of DBS units that have “steerable “ current. More specifically, I am interested in the St. Jude Infinity units ability to be used after the Medtronic units have seemed to lose therapeutic efficacy.
I’m curious if anyone has experience or knowledge of the new generation of DBS units that have “steerable “ current. More specifically, I am interested in the St. Jude Infinity units ability to be used after the Medtronic units have seemed to lose therapeutic efficacy.
etterus
in
Cure Parkinson's
4 years ago
Too much iron causing hypo symptoms?
I've realized that, anytime I happen to eat red meat or take an iron supplement, I rapidly start feeling cold, lethargic and in a depressive mood (exactly how I feel when I am hypo) that lasts for a couple days. It seems like the extra iron interferes someway with my hormones. I take my levo in the morning
I've realized that, anytime I happen to eat red meat or take an iron supplement, I rapidly start feeling cold, lethargic and in a depressive mood (exactly how I feel when I am hypo) that lasts for a couple days. It seems like the extra iron interferes someway with my hormones. I take my levo in the morning
1366acul
in
Thyroid UK
5 years ago
01/11/2020 neurologist appointment
Recommends again DBS for tremor. Says to qualify you must first show good response with medications. In my case that is carbidopa levodopa. Increased, for effort to control tremor, my CL dose interval to two hours. Doc.- “...we might be able to consolidate those doses into a longer acting form such as
Recommends again DBS for tremor. Says to qualify you must first show good response with medications. In my case that is carbidopa levodopa. Increased, for effort to control tremor, my CL dose interval to two hours. Doc.- “...we might be able to consolidate those doses into a longer acting form such as
Hidden
in
Cure Parkinson's
4 years ago
Iron specific anemia symptoms
I recently had my b12 loading doses and my understanding is that an iron test can test falsely high, or rather iron levels can suddenly become depleted after a b12 deficiency is rectified. I am developing what looks like bruising around my eyes without having any accidents recently which would account
I recently had my b12 loading doses and my understanding is that an iron test can test falsely high, or rather iron levels can suddenly become depleted after a b12 deficiency is rectified. I am developing what looks like bruising around my eyes without having any accidents recently which would account
Roo32
in
Pernicious Anaemia Society
5 years ago
Kent - Baby Observation
Hi everyone I’m Katherine :) I hope it's okay to post on here! Advice so far on here has been really helpful, so giving the post another go! I am doing an NHS training Masters in child development which I am doing in the evenings after work. ( I live in Kent and study in London) The main part of
Hi everyone I’m Katherine :) I hope it's okay to post on here! Advice so far on here has been really helpful, so giving the post another go! I am doing an NHS training Masters in child development which I am doing in the evenings after work. ( I live in Kent and study in London) The main part of
galliek
in
Pregnancy and Parenting Support
4 years ago
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