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Sjogren-Larsson syndrome
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Radiosurgery
Today marks 5 years since my radio-surgery, I got the all clear last February š.. most people I have spoken to had to have a second go under the gamma knife. I feel so lucky to get the all clear after the first attempt as I wouldnāt want the have the head frame fitted again (it wasnāt painful, just
Today marks 5 years since my radio-surgery, I got the all clear last February š.. most people I have spoken to had to have a second go under the gamma knife. I feel so lucky to get the all clear after the first attempt as I wouldnāt want the have the head frame fitted again (it wasnāt painful, just
Wazza84
in
Headway
6 years ago
steroids meds and hair, but mainly about hair loss
I know I keep banging on about hair, and sorry about that but its important to me I was worried about meds and losing hair, then I read steroids made this womans hair come out and it didn't grow back :O( so now worried about steroids so can I talk about hair, just hair on steroids and all the meds and
I know I keep banging on about hair, and sorry about that but its important to me I was worried about meds and losing hair, then I read steroids made this womans hair come out and it didn't grow back :O( so now worried about steroids so can I talk about hair, just hair on steroids and all the meds and
VeronicaF
in
NRAS
6 years ago
Went to Dennys restaurant yesterday
Had DENNY'S CRANBERRY APPLE CHICKEN SALAD Grilled seasoned chicken breast, glazed pecans, apple slices and dried cranberries atop a bed of crisp spring mix. I didn't feel I was missing out as it was delicious and for pudding I had a waffle syrup and strawberries so I really enjoyed it even though
Had DENNY'S CRANBERRY APPLE CHICKEN SALAD Grilled seasoned chicken breast, glazed pecans, apple slices and dried cranberries atop a bed of crisp spring mix. I didn't feel I was missing out as it was delicious and for pudding I had a waffle syrup and strawberries so I really enjoyed it even though
VeronicaF
in
NRAS
6 years ago
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Feeling awful.
I feel so tired/fatigued. soreness all over my back down to my waist. It's like a sunburn prickly feeling. Had to remove my bra. I feel so fed up and useless. Aching and feel so weak. I am on gabapentin which I thought was for the soreness feeling which I assume are the nerve endings. My immflamation
I feel so tired/fatigued. soreness all over my back down to my waist. It's like a sunburn prickly feeling. Had to remove my bra. I feel so fed up and useless. Aching and feel so weak. I am on gabapentin which I thought was for the soreness feeling which I assume are the nerve endings. My immflamation
Mandypandy1969
in
Fibromyalgia Action UK
6 years ago
Another rls night
Here I am again despite 0.18 mg of Pramipexole , to paracodeine 600 mg of paracetamol /40mg codeine, these are prescription meds for my spine and I usually only take one, I am still awake at 05.25 am. Iām so sick of this leg twitching . My dr says I am not to increase my dose of Pramipexole and kind
Here I am again despite 0.18 mg of Pramipexole , to paracodeine 600 mg of paracetamol /40mg codeine, these are prescription meds for my spine and I usually only take one, I am still awake at 05.25 am. Iām so sick of this leg twitching . My dr says I am not to increase my dose of Pramipexole and kind
Kayjay6161
in
Restless Legs Syndrome
6 years ago
Systemic Sclerosis
Just a further update on my previous post to save any confusion when I advised my Rheumatologist my GP had informed me I have crest syndrome he immediately advised that is an old term the disease is actually Systemic Sclerosis ;I have been referring to the disease as CREST on my post as that's the term
Just a further update on my previous post to save any confusion when I advised my Rheumatologist my GP had informed me I have crest syndrome he immediately advised that is an old term the disease is actually Systemic Sclerosis ;I have been referring to the disease as CREST on my post as that's the term
babyinny
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
After recovery from rhabdomyolysis
Hi there! I was unable to walk for one week during a bout of exertional rhabdomyolysis from too much cycling. Has anyone else suffered from this? I now know I have increased susceptibility to rhabdo due to an underlying condition of malignant hyperthermia. A doctor advised I should do more aerobic exercise
Hi there! I was unable to walk for one week during a bout of exertional rhabdomyolysis from too much cycling. Has anyone else suffered from this? I now know I have increased susceptibility to rhabdo due to an underlying condition of malignant hyperthermia. A doctor advised I should do more aerobic exercise
Katnap
Graduate
in
Couch to 5K
6 years ago
TAPERING - CAUGHT BETWEEN THE 'DEVIL' AND THE 'DEEP BLUE SEA'
Greetings Everyone I realise I am raising again possibly 'THE' (most) perennial' question we tackle here on the forum - that of the speed at which to taper. My particular problem - which I have mentioned here recently is that i have developed a rather insidious side effect of pred which I was not really
Greetings Everyone I realise I am raising again possibly 'THE' (most) perennial' question we tackle here on the forum - that of the speed at which to taper. My particular problem - which I have mentioned here recently is that i have developed a rather insidious side effect of pred which I was not really
Rimmy
in
PMRGCAuk
6 years ago
Hernia mesh!
Hi Guys hope you are as well as can be.Just a query ,Iāve got to have my Hernia fixed and after seeing the report on the Victoria Derbyshire program this op can leave you very disabled apparently upto 30% of patients are left in a bad way. Has anyone had this op not using mesh if so please let me know
Hi Guys hope you are as well as can be.Just a query ,Iāve got to have my Hernia fixed and after seeing the report on the Victoria Derbyshire program this op can leave you very disabled apparently upto 30% of patients are left in a bad way. Has anyone had this op not using mesh if so please let me know
Matalow
in
NRAS
6 years ago
DAs addicting?
I am currently not on anything for RLS. Still struggling with withdrawal from pramipexole. Itās been going on for months. I went to a sleep specialist whoās only plan would include a DA. I told him I cannot take DAs since I get terrible side effects, both while on the drug and after withdrawal. He
I am currently not on anything for RLS. Still struggling with withdrawal from pramipexole. Itās been going on for months. I went to a sleep specialist whoās only plan would include a DA. I told him I cannot take DAs since I get terrible side effects, both while on the drug and after withdrawal. He
Yakester
in
Restless Legs Syndrome
6 years ago
Tramadol withdrawal
I have mentioned previously that my neurologist wanted me to come off Tramadol. I was uncertain about this but I have had a go. Starting with 200mg I took 0.25 less the first week and I was relatively ok. The second week was a different story! Poor sleep, pain and legs on the go. Suffice to say I am
I have mentioned previously that my neurologist wanted me to come off Tramadol. I was uncertain about this but I have had a go. Starting with 200mg I took 0.25 less the first week and I was relatively ok. The second week was a different story! Poor sleep, pain and legs on the go. Suffice to say I am
martino
in
Restless Legs Syndrome
6 years ago
My RLS Story
Hello, my RLS started 4years go after taking a course of antidepressants'. I took myself of them but unfortunately, my RLS stayed with me. I also get it on my arms and chest. Never have it in both legs or arms at the same time but it can easily switch from limb to limb on one day. I lost alot of sleep
Hello, my RLS started 4years go after taking a course of antidepressants'. I took myself of them but unfortunately, my RLS stayed with me. I also get it on my arms and chest. Never have it in both legs or arms at the same time but it can easily switch from limb to limb on one day. I lost alot of sleep
markren
in
Restless Legs Syndrome
6 years ago
Qutenza patch
Has anyone tried this? It contains capsaicin. I use lidocaine patches to numb my sesamoiditis. I am awaiting referal to get the qutenza patch be put on.
Has anyone tried this? It contains capsaicin. I use lidocaine patches to numb my sesamoiditis. I am awaiting referal to get the qutenza patch be put on.
Khae
in
Fibromyalgia Action UK
6 years ago
Restless Toes syndrome
It seems like most people have restless legs syndrome, I have restless syndrome. Every night I take Requip 3, and during the day I take requip 1 of my toes twitching. when I go somewhere overnight and forget to put my requip in, that night my toes do their twitching and then they start hurting
It seems like most people have restless legs syndrome, I have restless syndrome. Every night I take Requip 3, and during the day I take requip 1 of my toes twitching. when I go somewhere overnight and forget to put my requip in, that night my toes do their twitching and then they start hurting
bauerannec
in
Restless Legs Syndrome
6 years ago
Dealing with the loss in memory
Hi, I was diagnosed with TLE when I was 18. The thing that I battle with the most is the mood disturbances, crippling depression and severe anxiety. After 4 years of trying to find the right treatment to manage my moods, I was eventually put on a high dose of 500mg Lamictin and 50mg Topalex. Since then
Hi, I was diagnosed with TLE when I was 18. The thing that I battle with the most is the mood disturbances, crippling depression and severe anxiety. After 4 years of trying to find the right treatment to manage my moods, I was eventually put on a high dose of 500mg Lamictin and 50mg Topalex. Since then
Clo_clo
in
Epilepsy South Africa
6 years ago
Pneumococcal Immunisation
Morning all, has anybody had Pneumococcal Immunisation whilst on steroids? I've been offered this as a precaution against pneumonia, septicaemia and meningitis. I'm slightly concerned about its interaction with GCA/PMR and/or steroids.
Morning all, has anybody had Pneumococcal Immunisation whilst on steroids? I've been offered this as a precaution against pneumonia, septicaemia and meningitis. I'm slightly concerned about its interaction with GCA/PMR and/or steroids.
Ronnie101
in
PMRGCAuk
6 years ago
First IVF appt - what to expect?!
Hi everyone, Apologies if this is already discussed elsewhere...Iāve just had my NHS IVF referral appt at the hospital confirmed by my GP for next month and wondering what to expect. From what I can gather this will be with a specialist/consultant at the hospital that provides the treatment to check
Hi everyone, Apologies if this is already discussed elsewhere...Iāve just had my NHS IVF referral appt at the hospital confirmed by my GP for next month and wondering what to expect. From what I can gather this will be with a specialist/consultant at the hospital that provides the treatment to check
threesthemagicnumber
in
Fertility Network UK
6 years ago
Has anyone successfully weaned off DA meds and feeling ok
As I awaken every morning around 4am I immediately go to this site in an attempt to read everything and anything I can to help me with this awful disorder. Thank you so much for all the helpful info. It has given me some tools to hopefully get a few hours of sleep here and there. I thought things were
As I awaken every morning around 4am I immediately go to this site in an attempt to read everything and anything I can to help me with this awful disorder. Thank you so much for all the helpful info. It has given me some tools to hopefully get a few hours of sleep here and there. I thought things were
mmb8083
in
Restless Legs Syndrome
6 years ago
Withdrawal symptoms rls
Just wondered if someone can give me some advice, I have rls and have been usi g pramipexole 88 mg tabs since 2013, I am upto 4 tabs a night, the drug hasn't really worked for a while, so went to go, advised too come off them and reduce my dosage over several days, which I have, I've now been prescribed
Just wondered if someone can give me some advice, I have rls and have been usi g pramipexole 88 mg tabs since 2013, I am upto 4 tabs a night, the drug hasn't really worked for a while, so went to go, advised too come off them and reduce my dosage over several days, which I have, I've now been prescribed
BLUES60
in
Restless Legs Syndrome
6 years ago
New medication
Hi there, Iāve recently been prescribed Glyceryl Trinitrate (Deponit) patches & Hydroxychloroquine (tablets) for my limited cutaneous systemic sclerosis after various previous meds not working. Has anyone else used these? Any success? Many thanks in advance for your replies š
Hi there, Iāve recently been prescribed Glyceryl Trinitrate (Deponit) patches & Hydroxychloroquine (tablets) for my limited cutaneous systemic sclerosis after various previous meds not working. Has anyone else used these? Any success? Many thanks in advance for your replies š
-missymoo
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
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