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Giant axonal neuropathy
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There’s no point to this post
Hi everyone, hope you’re all as well as can be. I’m approximately 3 1/2 years into this PMR. Sometimes it gets me down. I’ve been trying to start Humira for Ankylosing Spondylitis again, but the delivery company have been an absolute NIGHTMARE! It’s been so long since I last took it that I’m wondering
Hi everyone, hope you’re all as well as can be. I’m approximately 3 1/2 years into this PMR. Sometimes it gets me down. I’ve been trying to start Humira for Ankylosing Spondylitis again, but the delivery company have been an absolute NIGHTMARE! It’s been so long since I last took it that I’m wondering
Bramble2000
in
PMRGCAuk
8 months ago
"Scientists achieve breakthrough in treating 'neglected' polymyalgia rheumatica" - that's the headline but don't get too excited ...
https://www.news-medical.net/news/20231025/Scientists-achieve-breakthrough-in-treating-neglected-polymyalgia-rheumatica.aspx?utm_source=news_medical_newsletter&utm_medium=email&utm_campaign=rheumatology_newsletter_3_november_2023 The study is using sarilumab, aka Kevzara - not the first study, I'm sure
https://www.news-medical.net/news/20231025/Scientists-achieve-breakthrough-in-treating-neglected-polymyalgia-rheumatica.aspx?utm_source=news_medical_newsletter&utm_medium=email&utm_campaign=rheumatology_newsletter_3_november_2023 The study is using sarilumab, aka Kevzara - not the first study, I'm sure
PMRpro
Ambassador
in
PMRGCAuk
8 months ago
I figured out how to tolerate antibiotics (trimethoprim in this case) without huge neuropathic pain flare!! (for real this time!)
I've been posting about this on and off all year trying to get some answers. Anyway, I'll keep it short. I've been unable to tolerate Trimethoprim or Doxycycline without the both causing unbearable neuropathic pain (burning, stinging, tingling, etc). I tried multiple times and failed to continue after
I've been posting about this on and off all year trying to get some answers. Anyway, I'll keep it short. I've been unable to tolerate Trimethoprim or Doxycycline without the both causing unbearable neuropathic pain (burning, stinging, tingling, etc). I tried multiple times and failed to continue after
Whoa182
in
Pernicious Anaemia Society
10 months ago
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update to the return of AF/tachycardia and long talk with EP
Whistle stop tour of my history: Symptomatic AF since early 50’s( 67 now). 3TIAs previous to diagnosis. Anticoagulants and flecanide until flec caused elongation of PR interval. Ablation 1 partially successful Ablation 2 abandoned due to rare complication Controlled AF with Sotalol ( 120 mg x2)
Whistle stop tour of my history: Symptomatic AF since early 50’s( 67 now). 3TIAs previous to diagnosis. Anticoagulants and flecanide until flec caused elongation of PR interval. Ablation 1 partially successful Ablation 2 abandoned due to rare complication Controlled AF with Sotalol ( 120 mg x2)
dedeottie
in
AF Association
10 months ago
Types of Exercise
Does anyone know if certain types of exercise makes neuropathy worse? I wonder if walking is better than a Zumba or cardio dance class or water fitness classes? The intensity of the numbness comes and goes but I don’t know if it’s related to the exercise. I am not diabetic and the neurologist says I
Does anyone know if certain types of exercise makes neuropathy worse? I wonder if walking is better than a Zumba or cardio dance class or water fitness classes? The intensity of the numbness comes and goes but I don’t know if it’s related to the exercise. I am not diabetic and the neurologist says I
Yarn1985
in
Neuropathy Support
10 months ago
Guidance for RLS
Hi Everyone, I'm new to this forum and am so glad to have found you. I have suffered with RLS for years, and in the past year, it's become pretty severe. I get VERY little sleep. Currently, I'm taking Gabapentin and Magnesium Glycinate, but neither are helping--yet. I did take Carbidopa-Levodopa for
Hi Everyone, I'm new to this forum and am so glad to have found you. I have suffered with RLS for years, and in the past year, it's become pretty severe. I get VERY little sleep. Currently, I'm taking Gabapentin and Magnesium Glycinate, but neither are helping--yet. I did take Carbidopa-Levodopa for
PinkTLC
in
Restless Legs Syndrome
10 months ago
Help with Gabapentin please
Hello, I'm wandering if I need to up my ropinerole again during the day? I until the last few days have been coping, taking 1mg ropinerole at 6pm and 2 gabapentin at around 8pm before I go to bed sometimes a bit later depending what time I get home, no later than 10pm tho. The problem is last few days
Hello, I'm wandering if I need to up my ropinerole again during the day? I until the last few days have been coping, taking 1mg ropinerole at 6pm and 2 gabapentin at around 8pm before I go to bed sometimes a bit later depending what time I get home, no later than 10pm tho. The problem is last few days
Cobobay
in
Restless Legs Syndrome
10 months ago
Benefits of knowing your illness/condition/disease to help others as well as yourself
It’s about time I posted that a couple of months ago my husband was diagnosed with Giant Cell Arteritis. I was somewhat overwhelmed by the diagnosis having had PMR, GCA/LVV myself over the past 5 and a half years and haven’t, until now, felt ready to share his story on the forum.
It’s about time I posted that a couple of months ago my husband was diagnosed with Giant Cell Arteritis. I was somewhat overwhelmed by the diagnosis having had PMR, GCA/LVV myself over the past 5 and a half years and haven’t, until now, felt ready to share his story on the forum.
123-go
in
PMRGCAuk
9 months ago
notalgia paresthetica
I have vasculitis, MPA, and have developed nostalgia paresthetica, (my own diagnosis). Intense itching on my back is driving me crazy. This has been going on for a few months. Does anyone have experience with this and advice to share??
I have vasculitis, MPA, and have developed nostalgia paresthetica, (my own diagnosis). Intense itching on my back is driving me crazy. This has been going on for a few months. Does anyone have experience with this and advice to share??
GinnyMa
in
Vasculitis UK
11 months ago
Peripheral neuropathy
I have peripheral neuropathy in my legs and feet, the last few days, pain in my left foot has been severe enough to keep me awake at nights, I also have OAB which affects sleep...feel I've had no rest for a bit. Can anyone advice? Doc doesn't seem able to help, I've reach the end of my tether!!!
I have peripheral neuropathy in my legs and feet, the last few days, pain in my left foot has been severe enough to keep me awake at nights, I also have OAB which affects sleep...feel I've had no rest for a bit. Can anyone advice? Doc doesn't seem able to help, I've reach the end of my tether!!!
foxglove
in
Pain Concern
11 months ago
lipodystrophy and Parkinson’s?
does anyone else have lipodystrophy associated with their Parkinson’s? I’ve had Parkinson’s for more than 12 years and it has mostly been well controlled by steadily increasing levels of medication. Recently, however, I’ve been losing weight and body fat consistent with generalised Lipodystrophy. I
does anyone else have lipodystrophy associated with their Parkinson’s? I’ve had Parkinson’s for more than 12 years and it has mostly been well controlled by steadily increasing levels of medication. Recently, however, I’ve been losing weight and body fat consistent with generalised Lipodystrophy. I
Cv235
in
Cure Parkinson's
11 months ago
what test should i ask for??!
Hi all, On my 3rd FET & although not due to test until next week i have the gut feeling it hasn't worked as i have had brown watery type spotting/discharge since Tuesday. This is the last embryo of my 2nd ivf round. My question is with 3 failed transfers & having stage 4 endo is there any tests
Hi all, On my 3rd FET & although not due to test until next week i have the gut feeling it hasn't worked as i have had brown watery type spotting/discharge since Tuesday. This is the last embryo of my 2nd ivf round. My question is with 3 failed transfers & having stage 4 endo is there any tests
NM19
in
Fertility Network UK
7 months ago
5 days of provera done - now waiting for a period to start letrozole.
Hi everyone , as you all may know I have decided to put my second IVF on hold to give my body a chance on Letrozole. After the loss of my baby at 21 weeks and a failed fet and not responding great (112 gonal f) which was probably why! I have decided to try and trust my body . I say try because i
Hi everyone , as you all may know I have decided to put my second IVF on hold to give my body a chance on Letrozole. After the loss of my baby at 21 weeks and a failed fet and not responding great (112 gonal f) which was probably why! I have decided to try and trust my body . I say try because i
Hidden
in
Fertility Network UK
7 months ago
Advise on stimulation drugs
Hi all, The best response I ever had was on Menopur Since this is currently unavailable I’ve used Meriofert but egg count and quality has been poor. The consultant is advising Gonal F combined with Meriofert for the next round. Wondering if anyone has had a similar experience and found Gonal F/Meriofert
Hi all, The best response I ever had was on Menopur Since this is currently unavailable I’ve used Meriofert but egg count and quality has been poor. The consultant is advising Gonal F combined with Meriofert for the next round. Wondering if anyone has had a similar experience and found Gonal F/Meriofert
HC11_87
in
Fertility Network UK
7 months ago
Scientific opinion on the tolerable upper intake level for vitamin B6
The new scientific opinion (EFSA) revised in Europe the Tolerable Upper Intake Level
(UL) for vitamin B6 of 12.5 mg/day
for adults (including pregnant and lactating women), down from the previous UL of 30 mg/day set in 2000. For infants and children the ULs are: 2.2-2.5 mg/day (4-11 months), 3.2
The new scientific opinion (EFSA) revised in Europe the Tolerable Upper Intake Level
(UL) for vitamin B6 of 12.5 mg/day
for adults (including pregnant and lactating women), down from the previous UL of 30 mg/day set in 2000. For infants and children the ULs are: 2.2-2.5 mg/day (4-11 months), 3.2
Esperanto
in
Cure Parkinson's
11 months ago
Feeling a little disillusioned about TTFD and High Dose Thiamine (HDT):
My opinion: You can watch videos that say other B1’s are better; they are more powerful; they cross the BBB; etc. but you cannot find much (if any) info on long-term positive results [success stories]. Best to leave Benfothiamine, TTFD, Sulbutiamine, etc. alone and stay with what works for other people
My opinion: You can watch videos that say other B1’s are better; they are more powerful; they cross the BBB; etc. but you cannot find much (if any) info on long-term positive results [success stories]. Best to leave Benfothiamine, TTFD, Sulbutiamine, etc. alone and stay with what works for other people
Gcf51
in
Cure Parkinson's
11 months ago
what medication did you respond better on with pcos? Gonal f / menopur . Any others
hi all we start our ivf mid jan please see how i responded to gonal f 112.5 . I have pcos i was 25 at the time now i am 26 . I have a healthy bmi and no other issues . we didnt have a great response to ivf the first time round we only obtained 2 viable eggs . One stuck but i lost her sadly at 22 weeks
hi all we start our ivf mid jan please see how i responded to gonal f 112.5 . I have pcos i was 25 at the time now i am 26 . I have a healthy bmi and no other issues . we didnt have a great response to ivf the first time round we only obtained 2 viable eggs . One stuck but i lost her sadly at 22 weeks
Hidden
in
Fertility Network UK
7 months ago
Hope neuro is right
Hope neurologist is right or I'm done.Well the neurologist said it is not restless legs but nerve damage. He flatly refused to give me subutex without scientific proof, I told him that I did , He has taken me off temgesic as well and informed the other drs looking after me not to put me on it again..
Hope neurologist is right or I'm done.Well the neurologist said it is not restless legs but nerve damage. He flatly refused to give me subutex without scientific proof, I told him that I did , He has taken me off temgesic as well and informed the other drs looking after me not to put me on it again..
Hidden
in
Neuropathy Support
11 months ago
Hope neuro is right
Hope neurologist is right or I'm done.Well the neurologist said it is not restless legs but nerve damage. He flatly refused to give me subutex without scientific proof, I told him that I did , He has taken me off temgesic as well and informed the other drs looking after me not to put me on it again..
Hope neurologist is right or I'm done.Well the neurologist said it is not restless legs but nerve damage. He flatly refused to give me subutex without scientific proof, I told him that I did , He has taken me off temgesic as well and informed the other drs looking after me not to put me on it again..
Hidden
in
Neuropathy Support
11 months ago
Hope neuro is right
Hope neurologist is right or I'm done.Well the neurologist said it is not restless legs but nerve damage. He flatly refused to give me subutex without scientific proof, I told him that I did and to ring your dr also, he said he is not looking at someone's sob letter. He has taken me off temgesic as well
Hope neurologist is right or I'm done.Well the neurologist said it is not restless legs but nerve damage. He flatly refused to give me subutex without scientific proof, I told him that I did and to ring your dr also, he said he is not looking at someone's sob letter. He has taken me off temgesic as well
Hidden
in
Restless Legs Syndrome
11 months ago
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