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Experiences with
D-bifunctional protein (DBP) deficiency
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First symptoms
Hi all, I'm curious as to what everyone's first symptoms were? The symptoms that promoted you to visit the Dr? I have a colonoscopy and gastroscopy next week to investigate low iron, low b12 and various stomach/bowel issues. I had a blood test for Coeliac, but this takes 4 weeks to come back from the
Hi all, I'm curious as to what everyone's first symptoms were? The symptoms that promoted you to visit the Dr? I have a colonoscopy and gastroscopy next week to investigate low iron, low b12 and various stomach/bowel issues. I had a blood test for Coeliac, but this takes 4 weeks to come back from the
Itchyislander
in
Gluten Free Guerrillas
5 years ago
Playing with the settings of my brain
Hi all This is a link to my vlog about DBS and speech issues. https://www.youtube.com/watch?v=Sn4IP7-px0w Cheers, Ian
Hi all This is a link to my vlog about DBS and speech issues. https://www.youtube.com/watch?v=Sn4IP7-px0w Cheers, Ian
Ianfrizell
in
Cure Parkinson's
5 years ago
Confused regarding iron
Just seen another gp today as mine on annual leave, gp says not to treat with iron supplements as my ferreton normal, but my regular gp put me on supplements? ??? Any advice??
Just seen another gp today as mine on annual leave, gp says not to treat with iron supplements as my ferreton normal, but my regular gp put me on supplements? ??? Any advice??
sbadd
in
Thyroid UK
5 years ago
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Can't increase ferritin
Hi, previously I found out I was anaemic, low b12, low vitamin d, low magnesium, low ferritin. Suspected subclinical hypothyroidism. I took supplements and everything (apart from vit d) went up, with heamocrit at 38% But my ferritin has gone down from 25 to 21 The iron I was taking is bioheme (Iron glycinate
Hi, previously I found out I was anaemic, low b12, low vitamin d, low magnesium, low ferritin. Suspected subclinical hypothyroidism. I took supplements and everything (apart from vit d) went up, with heamocrit at 38% But my ferritin has gone down from 25 to 21 The iron I was taking is bioheme (Iron glycinate
stormjewel
in
Thyroid UK
5 years ago
INTERPRETATION OF RESULTS
Good afternoon all, now that I am taking the time to actually face reality with my recent diagnosis I wanted your feedback on my results as outlined below. I should point out that I will be revisiting my GP in the near future again to discuss my condition further however I wondered what steps I should
Good afternoon all, now that I am taking the time to actually face reality with my recent diagnosis I wanted your feedback on my results as outlined below. I should point out that I will be revisiting my GP in the near future again to discuss my condition further however I wondered what steps I should
Lollyloo1978
in
Pernicious Anaemia Society
5 years ago
DBS, has anyone considered this procedure to help with tremors?
I am scheduled to have this procedure next month. I have heard some good things from some PD patients and would like to hear other PD patient’s prospective. My diagnosis was in early 2018. Right hand tremor, now taking 25/100 x 3 (3 times/day), my procedure will be on my left side. Meds work, but tire
I am scheduled to have this procedure next month. I have heard some good things from some PD patients and would like to hear other PD patient’s prospective. My diagnosis was in early 2018. Right hand tremor, now taking 25/100 x 3 (3 times/day), my procedure will be on my left side. Meds work, but tire
PHN001
in
Cure Parkinson's
5 years ago
B1 Intolerance
My husband has tried taking B1 twice. Firstly with powder then recently with Solgar capsules as recommended. He started on 500mg capsule in the morning then 500mg late afternoon. After 7 days he felt it was making his symptoms worse and had to stop.I read how so many people are benefitting from B1 and
My husband has tried taking B1 twice. Firstly with powder then recently with Solgar capsules as recommended. He started on 500mg capsule in the morning then 500mg late afternoon. After 7 days he felt it was making his symptoms worse and had to stop.I read how so many people are benefitting from B1 and
JeanieBeanie
in
Cure Parkinson's
5 years ago
Can someone explain results Iron test
Doct has put me on iron supplements also offered infusion if i wanted?
Doct has put me on iron supplements also offered infusion if i wanted?
sbadd
in
Pernicious Anaemia Society
5 years ago
High active B12 without supplementing
Hello I was hoping somebody might be able to help, or provide assurance please? Back in February I was feeling so ill - fatigue, apathy, headaches, neurological issues, pins and needles (had these awhile), cold hands and feet, low body temp, struggling to lose weight (I have an underachieve thyroid which
Hello I was hoping somebody might be able to help, or provide assurance please? Back in February I was feeling so ill - fatigue, apathy, headaches, neurological issues, pins and needles (had these awhile), cold hands and feet, low body temp, struggling to lose weight (I have an underachieve thyroid which
emmagh26
in
Pernicious Anaemia Society
5 years ago
Dystonia and Parkinson's disease: What is the relationship?
Dystonia and Parkinson's disease are closely linked disorders sharing many pathophysiological overlaps. Dystonia can be seen in 30% or more of the patients suffering with PD and sometimes can precede the overt parkinsonism. The response of early dystonia to the introduction of dopamine replacement therapy
Dystonia and Parkinson's disease are closely linked disorders sharing many pathophysiological overlaps. Dystonia can be seen in 30% or more of the patients suffering with PD and sometimes can precede the overt parkinsonism. The response of early dystonia to the introduction of dopamine replacement therapy
Farooqji
in
Cure Parkinson's
5 years ago
Vitamin B12 as a Treatment for Pain
Found this new paper and was interested to see some work being done. Sadly, it just reviews existing data. (Oddly, it uses the term hydroxycobalamin, which is much less common. Indeed, MESH adds hydroxocobalamin automatically on PubMed searches - and there are many times more papers referring to hydroxocobalamin
Found this new paper and was interested to see some work being done. Sadly, it just reviews existing data. (Oddly, it uses the term hydroxycobalamin, which is much less common. Indeed, MESH adds hydroxocobalamin automatically on PubMed searches - and there are many times more papers referring to hydroxocobalamin
helvella
in
Pernicious Anaemia Society
5 years ago
Need Help and Advice On What I Can Do To Relieve The Intensity Level of My Current and Parkinsons Disease Symptoms
I was diagnosed with Parkinsons disease in 2003 disease. I have the rigidity type of Parkinsons disease and the symptoms have changed as to intensity level to be almost unbearable. It started out on the left side, but is now resident at a lesser level on my right side.The symptoms when I go into
I was diagnosed with Parkinsons disease in 2003 disease. I have the rigidity type of Parkinsons disease and the symptoms have changed as to intensity level to be almost unbearable. It started out on the left side, but is now resident at a lesser level on my right side.The symptoms when I go into
neilp02
in
Cure Parkinson's
5 years ago
Another FUS news. Now from Isreal . Looks like it's replacing DBS
The firm obtained US Food and Drug Administration (FDA) approval for its technology in 2016, based on a clinical study of 76 patients, which demonstrated that the treatment is effective and safe. A three-year follow-up of the same group of patients showed that tremor reduction was sustained over a period
The firm obtained US Food and Drug Administration (FDA) approval for its technology in 2016, based on a clinical study of 76 patients, which demonstrated that the treatment is effective and safe. A three-year follow-up of the same group of patients showed that tremor reduction was sustained over a period
Farooqji
in
Cure Parkinson's
5 years ago
How Diet is so important with Liver Cirrhosis and what a improvement in my Wife's blood results that we received today
Just to give you an update to how diet is very important with Liver Disease my Wife's serum ferritin levels were 1915 on the 31st Jan (very high) on the 28th March they were 817 what an improvement also her serum transferrin is improving from 0.8 to 1.4 and now her transferrin saturation Index is normal
Just to give you an update to how diet is very important with Liver Disease my Wife's serum ferritin levels were 1915 on the 31st Jan (very high) on the 28th March they were 817 what an improvement also her serum transferrin is improving from 0.8 to 1.4 and now her transferrin saturation Index is normal
popupstands
in
British Liver Trust
5 years ago
The link between Iron and RLS
There are several chemicals that are thought to be associated with the development and symptoms of RLS. One is of course dopamine, a chemical crucial for movement, thought process as well as motivation. Drugs which work on the dopamine system, such as pramipexole, ropinirole and rotigotine, are mainstays
There are several chemicals that are thought to be associated with the development and symptoms of RLS. One is of course dopamine, a chemical crucial for movement, thought process as well as motivation. Drugs which work on the dopamine system, such as pramipexole, ropinirole and rotigotine, are mainstays
Daragh
Restless Leg Syndrome
in
Restless Legs Syndrome
5 years ago
Is this related to Pernicious Anaemia?
Hope someone may be able to help me. I was on lunchtime duty today and the other staff member who was out with me commented to me that my lips were very blue and was l OK? I had my hands in my pocket at the time and l took them out to check my fingers and my left hand was a funny colour and the thumb
Hope someone may be able to help me. I was on lunchtime duty today and the other staff member who was out with me commented to me that my lips were very blue and was l OK? I had my hands in my pocket at the time and l took them out to check my fingers and my left hand was a funny colour and the thumb
CraftyKit
in
Pernicious Anaemia Society
5 years ago
Help! My legs are swollen all the time.
I have followed this community for a long time but rarely post. However, I am hoping someone can help me. I was diagnosed 17 years ago and had DBS on my left side to control my tremor in my right arm/hand in 2010. I am scheduled for DBS on June 3rd to make my symptoms on the left side behave. The swelling
I have followed this community for a long time but rarely post. However, I am hoping someone can help me. I was diagnosed 17 years ago and had DBS on my left side to control my tremor in my right arm/hand in 2010. I am scheduled for DBS on June 3rd to make my symptoms on the left side behave. The swelling
LauraL
in
Cure Parkinson's
5 years ago
low iron
hello all, my 13th year old daughter as low iron deficiency, doctors been doing tests on her for about a year now and every single test they do is coming back normal and the more iron she takes the more she lose, and she's not bleeding any where now she's going to get IV iron infusion once a week till
hello all, my 13th year old daughter as low iron deficiency, doctors been doing tests on her for about a year now and every single test they do is coming back normal and the more iron she takes the more she lose, and she's not bleeding any where now she's going to get IV iron infusion once a week till
jamaican1980
in
Pernicious Anaemia Society
5 years ago
Deep brain stimulation
Has anyone had deep brain stimulation? Did you have a good outcome? Did it reduce the tone? Desperate to hear from others x
Has anyone had deep brain stimulation? Did you have a good outcome? Did it reduce the tone? Desperate to hear from others x
Clgn83
in
Dystonia Society
5 years ago
dystonia after requip
My husband developed dystonia approximately 10 years ago. We figured out that he developed it after taking Requip. His provider was clueless that the Requip could have caused the dystonia. I am a retired nurse and figured it out about a year after he developed the dystonia. No one believed me when
My husband developed dystonia approximately 10 years ago. We figured out that he developed it after taking Requip. His provider was clueless that the Requip could have caused the dystonia. I am a retired nurse and figured it out about a year after he developed the dystonia. No one believed me when
Grvarley
in
Cure Parkinson's
5 years ago
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