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Answers at last
Just got back from seeing Dr Phillip Bull a private specialist in Hypermobility and EDS, he has diagnosed my son with Hypermobility EDS and POTS, given us both some great advice. For anyone who has been fobbed off by some Rheumatologists who have not got the skills in diagnosing EDS, it really is worth
Just got back from seeing Dr Phillip Bull a private specialist in Hypermobility and EDS, he has diagnosed my son with Hypermobility EDS and POTS, given us both some great advice. For anyone who has been fobbed off by some Rheumatologists who have not got the skills in diagnosing EDS, it really is worth
Anne2018
in
Ehlers-Danlos Support UK
6 years ago
AMH Levels?
Hi all, I’ve been TTC for 18 months. I fell naturally in month 3 but had a MMC. Cycles were never quite right and saw private consultant who prescribed Clomid. Just finished 7th round with no luck despite releasing two eggs every cycle at right time and good thickness endometrium. Consultant tested for
Hi all, I’ve been TTC for 18 months. I fell naturally in month 3 but had a MMC. Cycles were never quite right and saw private consultant who prescribed Clomid. Just finished 7th round with no luck despite releasing two eggs every cycle at right time and good thickness endometrium. Consultant tested for
Rivaligure
in
Fertility Network UK
6 years ago
My fight against augumentation
Hi all just thought id let you know about my last 5 weeks fighting above, ive been on parpeximole for 5 yrs starting with one then reaching 6, far too many, so in last 12mths my rls has increased to the point if not sleeping at all some nights, so i decided i would come off parpeximole as i thought i
Hi all just thought id let you know about my last 5 weeks fighting above, ive been on parpeximole for 5 yrs starting with one then reaching 6, far too many, so in last 12mths my rls has increased to the point if not sleeping at all some nights, so i decided i would come off parpeximole as i thought i
BLUES60
in
Restless Legs Syndrome
6 years ago
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Just an update and multi-diagnosis
I was recenty hospitalized for two weeks and was told it was FND after a stomach virus. However, I had my follow up Friday and he thinks there is a multi diagnosis here and I am will be seeing neurologist who focus is gearded towards a auto immune and ms. My apts are 6 hour commutes as I live in the
I was recenty hospitalized for two weeks and was told it was FND after a stomach virus. However, I had my follow up Friday and he thinks there is a multi diagnosis here and I am will be seeing neurologist who focus is gearded towards a auto immune and ms. My apts are 6 hour commutes as I live in the
acalandra995
in
Functional Neurological Disorder - FND Hope
6 years ago
Pregnancy and hip hyper mobility
Hi everyone Has anyone been pregnant and had this if there hip? X
Hi everyone Has anyone been pregnant and had this if there hip? X
Itsallinthehips
in
Ehlers-Danlos Support UK
6 years ago
Looking for various so called causes of RLS
Can anyone give me a list of ALL the 'causes' of RLS. There have been so many starting with lack of magnesium. I am not interested in the 'band aid' drugs we are all given but rather the suspected etiology (the cause) of RLS. Recently Johns Hopkins Hospital said it was too much glutamine in the brain
Can anyone give me a list of ALL the 'causes' of RLS. There have been so many starting with lack of magnesium. I am not interested in the 'band aid' drugs we are all given but rather the suspected etiology (the cause) of RLS. Recently Johns Hopkins Hospital said it was too much glutamine in the brain
auntiesioux
in
Restless Legs Syndrome
6 years ago
Memory issues from using Pravacol
I sure hope that there are people on this site that can give me some help or at least hope. I quit Pravacol 2 months ago after taking it for 6 months... Memory issues!!! I was told that by now things would be returning to my normal but they haven't. I have read that possibly COQ 10 may help --- there
I sure hope that there are people on this site that can give me some help or at least hope. I quit Pravacol 2 months ago after taking it for 6 months... Memory issues!!! I was told that by now things would be returning to my normal but they haven't. I have read that possibly COQ 10 may help --- there
GrandmaCC
in
Cholesterol Support
6 years ago
Mucuna Pruriens as a dopamine agonist and Aspartame
A few things I have read - I wonder if people have noticed a difference taking aspartame out of their diet and adding Mucuna Prurients. I personally avoid artificial sweeteners but have not tried Mucuna. "Aspartame is a synthetic, laboratory concocted, genetically modified, sugar-replacement nightmare
A few things I have read - I wonder if people have noticed a difference taking aspartame out of their diet and adding Mucuna Prurients. I personally avoid artificial sweeteners but have not tried Mucuna. "Aspartame is a synthetic, laboratory concocted, genetically modified, sugar-replacement nightmare
Goldy700
in
Restless Legs Syndrome
6 years ago
My experience with Ropinerole (Requip)
I have been on this drug since 2004. My mother, aunt and uncle have had it also, so runs in my family. About 1.5 years ago I mentioned to my doctor that the dose of .50 was no longer working, so he increased it to 1 mg. About a year ago, i noticed my RLS hitting earlier in the evening, so I started
I have been on this drug since 2004. My mother, aunt and uncle have had it also, so runs in my family. About 1.5 years ago I mentioned to my doctor that the dose of .50 was no longer working, so he increased it to 1 mg. About a year ago, i noticed my RLS hitting earlier in the evening, so I started
creepycrawly
in
Restless Legs Syndrome
6 years ago
Confused after many scans. 7 weeks, ivf.
Hi, My Name is Sarah. I recently had IVF which was successful luckily. Last Thursday I went for my viability scan at 7 weeks at the ivf clinic, which is to determine wether I am still pregnant and that it’s not ectopic etc. The nurse carried out the scan transvaginally, she congratulated us that she
Hi, My Name is Sarah. I recently had IVF which was successful luckily. Last Thursday I went for my viability scan at 7 weeks at the ivf clinic, which is to determine wether I am still pregnant and that it’s not ectopic etc. The nurse carried out the scan transvaginally, she congratulated us that she
Hidden
in
Pregnancy and Parenting Support
6 years ago
Radiosurgery
Today marks 5 years since my radio-surgery, I got the all clear last February 😁.. 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 wouldn’t want the have the head frame fitted again (it wasn’t painful, just
Today marks 5 years since my radio-surgery, I got the all clear last February 😁.. 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 wouldn’t want the have the head frame fitted again (it wasn’t 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
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. I’m 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. I’m 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
Post Grad Musing! 🤔 Keep going, it really is so worth it! ❤️
Hi Runners A pretty eventful run yesterday and nothing to do with a PB! Although it might be a PB in the amount of obstacles and things that kept NOT going according to the plan. SaskieAllieCat had me musing about my C25K journey so far. I thought I would share my thinking about my not so great run,
Hi Runners A pretty eventful run yesterday and nothing to do with a PB! Although it might be a PB in the amount of obstacles and things that kept NOT going according to the plan. SaskieAllieCat had me musing about my C25K journey so far. I thought I would share my thinking about my not so great run,
Fabulous450
Graduate
in
Couch to 5K
6 years ago
Hernia mesh!
Hi Guys hope you are as well as can be.Just a query ,I’ve 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 ,I’ve 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
Zinc
Since being diagnosed with macular degeneration recently I have been taking a supplement containing lutein. It also contains zinc. I seem to remember hearing/seeing something about zinc being contraindicated for taking when using predisolone for pmr. I have pmrgca, into third year, down, at second attempt
Since being diagnosed with macular degeneration recently I have been taking a supplement containing lutein. It also contains zinc. I seem to remember hearing/seeing something about zinc being contraindicated for taking when using predisolone for pmr. I have pmrgca, into third year, down, at second attempt
DDKRM
in
PMRGCAuk
6 years ago
DAs addicting?
I am currently not on anything for RLS. Still struggling with withdrawal from pramipexole. It’s been going on for months. I went to a sleep specialist who’s 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. It’s been going on for months. I went to a sleep specialist who’s 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
Newly Diagnosed
After suffering with Raynaud’s for a couple of years I finally saw a rheumatologist about 6 weeks ago. Blood tests reveal that I am anticentromere antibody positive with Systemic Sclerosis, which I understand used to be called CREST Syndrome. She has organised a whole host of further tests, bloods, X-rays
After suffering with Raynaud’s for a couple of years I finally saw a rheumatologist about 6 weeks ago. Blood tests reveal that I am anticentromere antibody positive with Systemic Sclerosis, which I understand used to be called CREST Syndrome. She has organised a whole host of further tests, bloods, X-rays
Cubbikins
in
Scleroderma & Raynaud's UK (SRUK)
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
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