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A bit of drama on Besremi
(there's a sort of survey question near the end) I've been on it for 3 months now. From starting dose of 50mcg for HU transition my dose last week was ~110. -That evening I had high sensitivity to light, looking at the overhead kitchen light was nearly like looking at the sun. Even the white sink
(there's a sort of survey question near the end) I've been on it for 3 months now. From starting dose of 50mcg for HU transition my dose last week was ~110. -That evening I had high sensitivity to light, looking at the overhead kitchen light was nearly like looking at the sun. Even the white sink
EPguy
in
MPN Voice
2 years ago
L5 S1 fusion, laminectomy and bilateral foraminotomy
I am coming up on 3 months post op. I go to therapy 2 x a week and can walk moderately for 15-30 minutes a day but every time I think I am making progress as far as being pain free I have a bad spell needing meds, ice and heat again. I am 60 and may just be slow to heal?
I am coming up on 3 months post op. I go to therapy 2 x a week and can walk moderately for 15-30 minutes a day but every time I think I am making progress as far as being pain free I have a bad spell needing meds, ice and heat again. I am 60 and may just be slow to heal?
Jeaniem130
in
Pain Concern
2 years ago
Help Ulster University research access to rehab services
If you have PSP or CBD and are living in Northern Ireland could you help researchers at Ulster University learn more about access to rehabilitation services (including physio, occupational therapy, speech therapists, psychologists)? This research will involve joining a 90-minutes virtual Focus Group
If you have PSP or CBD and are living in Northern Ireland could you help researchers at Ulster University learn more about access to rehabilitation services (including physio, occupational therapy, speech therapists, psychologists)? This research will involve joining a 90-minutes virtual Focus Group
HelenPSPA
in
PSP Association
2 years ago
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An Unusual False-Positive Uptake of Radioiodine Caused by Breast Implants
Posting this simply to let everyone know! If the issue applies, make sure you discuss properly with anyone who wants to give you radioactive iodine. I suspect it will be at the obscure end of the scale. [i]Clin Nucl Med. 2022 Mar 30. doi: 10.1097/RLU.0000000000004165. Online ahead of print.
An
Posting this simply to let everyone know! If the issue applies, make sure you discuss properly with anyone who wants to give you radioactive iodine. I suspect it will be at the obscure end of the scale. [i]Clin Nucl Med. 2022 Mar 30. doi: 10.1097/RLU.0000000000004165. Online ahead of print.
An
helvella
Thyroid UK
in
Thyroid UK
2 years ago
Learning to live with Covid
Since all the rules were dropped in favour of learning to live with covid, I’ve been expecting to see comments on here, perhaps I missed them. As someone who was born with PCD, survived war living in industrial Birmingham, going to bed in cold damp air raid shelter, did my bit by collecting shrapnel
Since all the rules were dropped in favour of learning to live with covid, I’ve been expecting to see comments on here, perhaps I missed them. As someone who was born with PCD, survived war living in industrial Birmingham, going to bed in cold damp air raid shelter, did my bit by collecting shrapnel
Morrison10
in
Lung Conditions Community Forum
2 years ago
MUSIC THERAPY FOR ALIEN HAND
My husband who suffers from CBD is increasingly plagued by his hand clenching and clawing, especially at night. We have tried different objects, such as a rubber ball and rolled up towels but they don't ease the problem. I'm wondering about soothing music with headphones as a brain distraction.
My husband who suffers from CBD is increasingly plagued by his hand clenching and clawing, especially at night. We have tried different objects, such as a rubber ball and rolled up towels but they don't ease the problem. I'm wondering about soothing music with headphones as a brain distraction.
Perrywrinkle
in
PSP Association
2 years ago
Ototoxic drugs
I was scrolling through some old posts looking for something about habituation. But what caught my eye was a post about ototoxic drugs - those medications which may have an adverse effect on T, specifically. Either currently or in the past I’ve been prescribed several of those mentioned and none of these
I was scrolling through some old posts looking for something about habituation. But what caught my eye was a post about ototoxic drugs - those medications which may have an adverse effect on T, specifically. Either currently or in the past I’ve been prescribed several of those mentioned and none of these
Happyrosie
in
Tinnitus UK
2 years ago
Et + Cutaneous Mastocytosis
Blessed Day to everyone! Does anyone here having ET and cutaneous Mastocytosis or systemic Mastocytosis? Can I know what symptoms currently you facing ? Did you have headaches almost everyday 😞.
Blessed Day to everyone! Does anyone here having ET and cutaneous Mastocytosis or systemic Mastocytosis? Can I know what symptoms currently you facing ? Did you have headaches almost everyday 😞.
Ryna-Ally
in
MPN Voice
2 years ago
Hyperacusis, tinnitus & headache
Hi, not been on here for a while but I suffer from Hyperacusis & tinnitus daily. Not sure if the tinnitus is worse or the Hyperacusis which does make it worse. I now have bad heads every day, these are from the top of my head down over my forehead and eyes. Does anyone else have this or is it a separate
Hi, not been on here for a while but I suffer from Hyperacusis & tinnitus daily. Not sure if the tinnitus is worse or the Hyperacusis which does make it worse. I now have bad heads every day, these are from the top of my head down over my forehead and eyes. Does anyone else have this or is it a separate
CalleLaurel
in
British Tinnitus Association
2 years ago
Rare diseases
Does any body on this site, have a very rare lung disease called pulmonary langerhans cell histiocytosis?
Does any body on this site, have a very rare lung disease called pulmonary langerhans cell histiocytosis?
Sandrapez
in
Lung Conditions Community Forum
2 years ago
A traffic jam in a city in my head day and night.
I go to bed at 9pm and put on a speaker head band with sleep music or crickets. This helps me fall asleep most of the time within minutes rather than without. My T wakes me/keeps me awake every night after 4-5 hours sleep without fail. I'm awake for 1-2 hours, and I often get up and read (write this
I go to bed at 9pm and put on a speaker head band with sleep music or crickets. This helps me fall asleep most of the time within minutes rather than without. My T wakes me/keeps me awake every night after 4-5 hours sleep without fail. I'm awake for 1-2 hours, and I often get up and read (write this
daverussell
in
Tinnitus UK
2 years ago
L-tryptophan or 5-HTP
If I wean myself off 7.5mg of Mirtazapine ,I am wondering if l-tryptophan or 5 -HTP would be an effective substitute ? If so ,which one is preferable please and what would a characteristic dosage ? How long until one would see an improvement in sleep patterns? Thanks Peter
If I wean myself off 7.5mg of Mirtazapine ,I am wondering if l-tryptophan or 5 -HTP would be an effective substitute ? If so ,which one is preferable please and what would a characteristic dosage ? How long until one would see an improvement in sleep patterns? Thanks Peter
DR650SE
in
British Tinnitus Association
2 years ago
Red line and dark discoloration on neck
Hi Folks. Hope everyone is safe and well during this pandemic. Ever since the pandemic started and the stress went overboard, I've started having this thin red/dark line on the side of my neck. It comes and goes, for the last two days it's been there. Somedays it disappears. There's not much discomfort
Hi Folks. Hope everyone is safe and well during this pandemic. Ever since the pandemic started and the stress went overboard, I've started having this thin red/dark line on the side of my neck. It comes and goes, for the last two days it's been there. Somedays it disappears. There's not much discomfort
MairaN88
in
Thyroid UK
2 years ago
B2 vitamin
I have recently come across having low B2 causing low mode, fatigue, skin problems, hair falling out etc. I have had some of the symptoms of low B2 I know my b12 is in the right range. A B2 test needs you to do a pee test. I’ve not ever been tested for low B2 and I’m wondering may be this is getting
I have recently come across having low B2 causing low mode, fatigue, skin problems, hair falling out etc. I have had some of the symptoms of low B2 I know my b12 is in the right range. A B2 test needs you to do a pee test. I’ve not ever been tested for low B2 and I’m wondering may be this is getting
LittleA
in
Pernicious Anaemia Society
2 years ago
Information
Hi I’ve just been diagnosed with fibromyalgia after suffering for 18 months. Any information would be gratefully received 😊 Does anyone suffer from a head tremor ?
Hi I’ve just been diagnosed with fibromyalgia after suffering for 18 months. Any information would be gratefully received 😊 Does anyone suffer from a head tremor ?
Dandydog3
in
Fibromyalgia Action UK
2 years ago
PCR test
I never received the letter or email regarding the PCR test. I called 119 who said they could not send the special PCR test as I hadn’t received the letter. They suggest I called gp which I did & practice manager was supposed to call me back next day. No call. The thing that worries me is why am
I never received the letter or email regarding the PCR test. I called 119 who said they could not send the special PCR test as I hadn’t received the letter. They suggest I called gp which I did & practice manager was supposed to call me back next day. No call. The thing that worries me is why am
juli-pa
in
Vasculitis UK
2 years ago
thalidomide
Hi The hematologist has raised the option of prescribing thalidomide. I am taking ruxolitnib 5mg twice daily and inject eprex once weekly zario 3 times a week. I have MF . I will be greatfull for any info form anyone with experience of this drug.
Hi The hematologist has raised the option of prescribing thalidomide. I am taking ruxolitnib 5mg twice daily and inject eprex once weekly zario 3 times a week. I have MF . I will be greatfull for any info form anyone with experience of this drug.
WeeHarry
in
MPN Voice
2 years ago
Why do I not show symptoms of covid when I tested positive
Hi casperpet here I've done two lateral flow tests both positive I've sent my pcr away but the thing is I am not showing any symptoms of covid . I have COPD / EMPHIZEMA/AND IVE SUFFERED FROM ASTHMA SINCE I WAS A BOY. I have degenerative discs in my lower back aswell . I'm nearly 72yrs old I was thinking
Hi casperpet here I've done two lateral flow tests both positive I've sent my pcr away but the thing is I am not showing any symptoms of covid . I have COPD / EMPHIZEMA/AND IVE SUFFERED FROM ASTHMA SINCE I WAS A BOY. I have degenerative discs in my lower back aswell . I'm nearly 72yrs old I was thinking
casperpet
in
Lung Conditions Community Forum
2 years ago
Fingers firmly crossed
For my daughter's wedding later this week. She had had her wedding postponed 3 times due to COVID. Her 4 th attempt is this week. Wish us luck PCR /lateral flow tests at the ready super dooper masks all set ,social distances tape measures in hand!
For my daughter's wedding later this week. She had had her wedding postponed 3 times due to COVID. Her 4 th attempt is this week. Wish us luck PCR /lateral flow tests at the ready super dooper masks all set ,social distances tape measures in hand!
Cloudancer
in
Lung Conditions Community Forum
3 years ago
Give me an advise please
Hello. I am from Russia and i am 24 years old. In the middle of last month I woke up to a sudden noise in my right ear. The noise was like a high-frequency ringing and I couldn't even hear my own thoughts because it was so loud. I was afraid that something serious had happened to my ear and early in
Hello. I am from Russia and i am 24 years old. In the middle of last month I woke up to a sudden noise in my right ear. The noise was like a high-frequency ringing and I couldn't even hear my own thoughts because it was so loud. I was afraid that something serious had happened to my ear and early in
Joe182
in
British Tinnitus Association
3 years ago
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