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Experiences with
D-bifunctional protein (DBP) deficiency
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Focused Ultrasound in Switzerland
I have decided to see if I can have focused ultrasound at Sonimodul clinic in Switzerland. The neurologist there has the most experienced and 2 friends have had excellent results. I’ve collated lots of information for anyone who’s interested. https://sonimodul.ch https://www.frontiersin.org/articles
I have decided to see if I can have focused ultrasound at Sonimodul clinic in Switzerland. The neurologist there has the most experienced and 2 friends have had excellent results. I’ve collated lots of information for anyone who’s interested. https://sonimodul.ch https://www.frontiersin.org/articles
Trixiedee
in
Cure Parkinson's
5 years ago
Deep Brain Stimulation
Hi, my partner has Dystonia and we may be going down the route of Deep Brain stimulation. Has anyone had this? is there any personal stories anyone wanted to share? Thanks in advance xx
Hi, my partner has Dystonia and we may be going down the route of Deep Brain stimulation. Has anyone had this? is there any personal stories anyone wanted to share? Thanks in advance xx
Clgn83
in
Dystonia Society
5 years ago
Good news at last
I recently had a blood test after 3 mths of taking iron tablets Yesterday my G,P rang to tell me the result. My Ferritin level had gone up from 45 to 95 which was really good news. My RLS has felt a lot better recently so I am going to take the iron for another 3 mths to see if the level will go
I recently had a blood test after 3 mths of taking iron tablets Yesterday my G,P rang to tell me the result. My Ferritin level had gone up from 45 to 95 which was really good news. My RLS has felt a lot better recently so I am going to take the iron for another 3 mths to see if the level will go
bedith6
in
Restless Legs Syndrome
5 years ago
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Anemic
I take Levothyroxine for hypothyroid I have tested as anemic following a gastric bug am feeling awful symptoms go has referred me for stomach tests but I am not showing low iron and did not offer any treatment for symptoms of awful fatigue cold hands electric shocks light headed shortness of breath
I take Levothyroxine for hypothyroid I have tested as anemic following a gastric bug am feeling awful symptoms go has referred me for stomach tests but I am not showing low iron and did not offer any treatment for symptoms of awful fatigue cold hands electric shocks light headed shortness of breath
annestev20
in
Thyroid UK
5 years ago
In a quandary!
Hi everyone, it’s a very long time since I last posted. I have managed to get down to 4.5mg Pred for my PMRGCA with a few stresses on the way when I had to pause for a while. My iron levels were down a bit recently so my GP put me on 200mg Ferrous Sulfate 1 daily and after a few weeks my iron levels
Hi everyone, it’s a very long time since I last posted. I have managed to get down to 4.5mg Pred for my PMRGCA with a few stresses on the way when I had to pause for a while. My iron levels were down a bit recently so my GP put me on 200mg Ferrous Sulfate 1 daily and after a few weeks my iron levels
Sandybo
in
PMRGCAuk
5 years ago
Another Question about DBS
I’ve been following the latest discussions about DBS. It makes me feel hopeful. However, I have a pacemaker already and am wondering if that would disqualify me as a candidate. Has anyone ever heard anything about this? I plan to ask my MDS, but I don’t see him again until next January.
I’ve been following the latest discussions about DBS. It makes me feel hopeful. However, I have a pacemaker already and am wondering if that would disqualify me as a candidate. Has anyone ever heard anything about this? I plan to ask my MDS, but I don’t see him again until next January.
Cjbro2000
in
Cure Parkinson's
5 years ago
Teva levothyroxine includes mannitol
I have received some information that the Teva brand of levothyroxine now includes mannitol in the ingredient list. We have received some reports that people are not very well on Teva and so I am interested to see how many people have been given this brand; whether their PIL states that it includes
I have received some information that the Teva brand of levothyroxine now includes mannitol in the ingredient list. We have received some reports that people are not very well on Teva and so I am interested to see how many people have been given this brand; whether their PIL states that it includes
lynmynott
Thyroid UK
in
Thyroid UK
5 years ago
DBS
Anyone that has had DBS, would you please share your experience? I’m highly considering starting the approval process. I’m 45, dx in 2008, and have exhausted medication options. I’ve tried diet, exercise, HDT.
Anyone that has had DBS, would you please share your experience? I’m highly considering starting the approval process. I’m 45, dx in 2008, and have exhausted medication options. I’ve tried diet, exercise, HDT.
Jlloy5
in
Cure Parkinson's
5 years ago
WHICH WOULD YOU CONSIDER AS THE MOST BENEFICIAL TO YOU AS A PD TREATMENT? MEDICATION OR DBS.
Hi fellow parkies and caregivers.For patients and caregivers,your opinions we go a long way to help me decide on my options,at the right time.Please if you have been on medication therapy for sveral years and then opted for surgery with DBS.Kindly share your experiences.As I understand through my searches
Hi fellow parkies and caregivers.For patients and caregivers,your opinions we go a long way to help me decide on my options,at the right time.Please if you have been on medication therapy for sveral years and then opted for surgery with DBS.Kindly share your experiences.As I understand through my searches
GBAMIGOD
in
Cure Parkinson's
5 years ago
Can someone help me understand my results?
I have been reading posts for the past year trying to get my head around the wealth of info without much success. To give you some context, I failed to pass the prick test when I went to donate blood in Feb 2018. Blood service wanted me to contact GP as it wasn’t the first time they had refused my blood
I have been reading posts for the past year trying to get my head around the wealth of info without much success. To give you some context, I failed to pass the prick test when I went to donate blood in Feb 2018. Blood service wanted me to contact GP as it wasn’t the first time they had refused my blood
Mrsell
in
Pernicious Anaemia Society
5 years ago
DBS battery--affecting my symptoms?
I had DBS surgery 4.5 years ago. I have been alerted to the fact that my battery needs changing out by my DBS monitor, and I am having the minimal surgery on 4/24. I was diagnosed almost 20 years ago (I am now 70) and have stayed fairly functional. Until now. For the last couple of months, my symptoms
I had DBS surgery 4.5 years ago. I have been alerted to the fact that my battery needs changing out by my DBS monitor, and I am having the minimal surgery on 4/24. I was diagnosed almost 20 years ago (I am now 70) and have stayed fairly functional. Until now. For the last couple of months, my symptoms
tnleighla
in
Cure Parkinson's
5 years ago
T3 and iron supplements
Dear all, I’d be very grateful for some advice. I take T3 first thing in the morning and then at about 6pm (on an empty stomach). I saw my rheumy yesterday (I have Sjögrens/lupus overlap) and told her that my legs are really achy...they have been for ages. She said that this was sometimes caused by
Dear all, I’d be very grateful for some advice. I take T3 first thing in the morning and then at about 6pm (on an empty stomach). I saw my rheumy yesterday (I have Sjögrens/lupus overlap) and told her that my legs are really achy...they have been for ages. She said that this was sometimes caused by
puffyface
in
Thyroid UK
5 years ago
Stomach virus.. Should I increase pred for a few days?
I've had a nasty stomach virus for a few days. PMR symptoms under control. Should I increase pred for a few days? Just thinking of adrenal glands. I've had a headache all day but could be due to no caffeine. Thanks friends.
I've had a nasty stomach virus for a few days. PMR symptoms under control. Should I increase pred for a few days? Just thinking of adrenal glands. I've had a headache all day but could be due to no caffeine. Thanks friends.
bunnymom
in
PMRGCAuk
5 years ago
Labs now showing anemia???
Please excuse my ignorance. I have PA, and had a CBC done on February 18, (with other tests) but no iron. All the labs were in normal range, except for the ones diagnosing me with PA. Almost 2 weeks later my Hematologist ran a CBC with full iron tests (minus folate). My CBC is showing as follows:
Please excuse my ignorance. I have PA, and had a CBC done on February 18, (with other tests) but no iron. All the labs were in normal range, except for the ones diagnosing me with PA. Almost 2 weeks later my Hematologist ran a CBC with full iron tests (minus folate). My CBC is showing as follows:
Nanc72
in
Pernicious Anaemia Society
5 years ago
Blood tests results what do they mean
Hi my results are as follows blood test for full blood count and iron Haemoglobin 103 Red cell 3.42 Hamacrit 0.304 Can someone let me know what it means
Hi my results are as follows blood test for full blood count and iron Haemoglobin 103 Red cell 3.42 Hamacrit 0.304 Can someone let me know what it means
Brightonlady
in
CLL Support
5 years ago
HDT and dyskinesia
A friend of mine and a PWP has severe dyskinesia and I was wondering if the high dose thiamine protocol would help her? I understand that HDT is meant to prevent developing dyskinesia but I'm not sure if it helps decrease the movements once you have it. She was considering deep brain stimulation but
A friend of mine and a PWP has severe dyskinesia and I was wondering if the high dose thiamine protocol would help her? I understand that HDT is meant to prevent developing dyskinesia but I'm not sure if it helps decrease the movements once you have it. She was considering deep brain stimulation but
Shaky-hand
in
Cure Parkinson's
5 years ago
Ferrous sulphate dose enquiry
Hi, ive been placed on ferrous sulphate about 2 weeks ago because of low ferritin levels. They decreased from 30 to 15 and i was prescribed 600mg daily (200mg x 3). Theyve been making me feel gradually worse and for the past 2 days i feel extremely dizzy and short of breath. Im starting to think its
Hi, ive been placed on ferrous sulphate about 2 weeks ago because of low ferritin levels. They decreased from 30 to 15 and i was prescribed 600mg daily (200mg x 3). Theyve been making me feel gradually worse and for the past 2 days i feel extremely dizzy and short of breath. Im starting to think its
Ksblue
in
Pernicious Anaemia Society
5 years ago
Does Deep brain stimulation even work for Dystonia
Hi all my name is Joshua, I have got some questions and concerned about the opt I’ve had over a year ago called deep brain stimulating (DBS), my doctor told me that it would approximately take a year before I can see any changes but it has been now over a year and I haven’t seen anything happening I
Hi all my name is Joshua, I have got some questions and concerned about the opt I’ve had over a year ago called deep brain stimulating (DBS), my doctor told me that it would approximately take a year before I can see any changes but it has been now over a year and I haven’t seen anything happening I
Josh_l
in
Cure Parkinson's
5 years ago
Normal ferritin with low plasma iron result. Do I need to take iron or not
I posted results here 2 weeks ago as had been feeling bad for some time https://healthunlocked.com/thyroiduk/posts/139974304/help-with-normal-blood-test-results-but-feeling-terrible The GP didn't want to do anything about low iron or high ESR results 1. Plasma iron level 10.0 umol/L [10.7 - 32.2]
I posted results here 2 weeks ago as had been feeling bad for some time https://healthunlocked.com/thyroiduk/posts/139974304/help-with-normal-blood-test-results-but-feeling-terrible The GP didn't want to do anything about low iron or high ESR results 1. Plasma iron level 10.0 umol/L [10.7 - 32.2]
carer999
in
Thyroid UK
5 years ago
Ferritin/iron result - should I increase iron supplementation?
Hi everyone, I have just received the result from Medichecks re my iron deficiency check. When first diagnosed with hypothyroidism in 2017, my ferritin was 33. For one month I supplemented with one ferrous fumarate 210 mg per day, then stopped for fear of overdosing. A couple of months after that I did
Hi everyone, I have just received the result from Medichecks re my iron deficiency check. When first diagnosed with hypothyroidism in 2017, my ferritin was 33. For one month I supplemented with one ferrous fumarate 210 mg per day, then stopped for fear of overdosing. A couple of months after that I did
Caroline888
in
Thyroid UK
5 years ago
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