Julie Gould
@grumpyoldgould.bsky.social
Corrie fan, cat lover, Atheist, more radical with age, often grumpy particularly about Tory corruption. #MS #RLS. No DMs.
Nonsense. It's old,outdated infrastructure that has caused this. The usual takeover of a national asset by investors & no investments/updates. #Embarrassing
March 21, 2025 at 5:59 PM
Nonsense. It's old,outdated infrastructure that has caused this. The usual takeover of a national asset by investors & no investments/updates. #Embarrassing
You might have to consider a private iv iron infusion at #TheIronClinic. Costs around £800. You send full iron panel blood tests & they'll take it from there. Expensive though!
March 12, 2025 at 6:28 PM
You might have to consider a private iv iron infusion at #TheIronClinic. Costs around £800. You send full iron panel blood tests & they'll take it from there. Expensive though!
OMG. That is negligent. Cold turkey from #Pramipexole is dangerous. Experts recommend 6 months & opioids to help! Iron infusions are not painful. They take 15 minutes. Join #RLS-UK & have a look at their help forum.
March 12, 2025 at 6:26 PM
OMG. That is negligent. Cold turkey from #Pramipexole is dangerous. Experts recommend 6 months & opioids to help! Iron infusions are not painful. They take 15 minutes. Join #RLS-UK & have a look at their help forum.
You should have had an iron infusion! The UK is so far behind best treatment & practice on #RLS. But at least #Dopamineagonists have now been relegated to last resort by new #NICE cks guidance.
March 12, 2025 at 9:29 AM
You should have had an iron infusion! The UK is so far behind best treatment & practice on #RLS. But at least #Dopamineagonists have now been relegated to last resort by new #NICE cks guidance.
Serum ferritin should ideally be above 200ųg/L for RLS patients to push iron through the blood/brain barrier. See RLS-UK website. NICE cks guidance changed overnight- without any press release/announcement recently.
March 12, 2025 at 9:27 AM
Serum ferritin should ideally be above 200ųg/L for RLS patients to push iron through the blood/brain barrier. See RLS-UK website. NICE cks guidance changed overnight- without any press release/announcement recently.
That is fantastic. Fingers crossed it continues.
February 23, 2025 at 2:26 PM
That is fantastic. Fingers crossed it continues.
Yes. It's the same one that has been linked to RLS. I just hope a Neurology dept somewhere decides to do trials. I'm so glad it's helping you. My #RLS is completely controlled by Buprenorphine. But other people can't get hold of it or have really bad side effects. So another drug option is great.
February 23, 2025 at 2:25 PM
Yes. It's the same one that has been linked to RLS. I just hope a Neurology dept somewhere decides to do trials. I'm so glad it's helping you. My #RLS is completely controlled by Buprenorphine. But other people can't get hold of it or have really bad side effects. So another drug option is great.
'Several whistleblowers had come forward to voice their concerns, but these were ignored'.
Sadly, that sums up the culture in most NHS trusts. There needs to be a truly independent, impartial review body to investigate patient & staff concerns.
Sadly, that sums up the culture in most NHS trusts. There needs to be a truly independent, impartial review body to investigate patient & staff concerns.
February 23, 2025 at 12:16 PM
'Several whistleblowers had come forward to voice their concerns, but these were ignored'.
Sadly, that sums up the culture in most NHS trusts. There needs to be a truly independent, impartial review body to investigate patient & staff concerns.
Sadly, that sums up the culture in most NHS trusts. There needs to be a truly independent, impartial review body to investigate patient & staff concerns.
Weird coincidence. I am a trustee of RLS-UK & get updates of all research studies. Emgality just came up in my alerts. It has been used for patients with migraine AND RLS. And it reduced #RLS symptoms significantly. Now to find UK #Neurologists interested in doing proper trials!
February 23, 2025 at 12:11 PM
Weird coincidence. I am a trustee of RLS-UK & get updates of all research studies. Emgality just came up in my alerts. It has been used for patients with migraine AND RLS. And it reduced #RLS symptoms significantly. Now to find UK #Neurologists interested in doing proper trials!
Bloomin eck Ursula, Cluster headaches are absolutely brutal. My FIL had them & I know how devastating they are. I'm so glad the meds are helping.
February 16, 2025 at 4:48 PM
Bloomin eck Ursula, Cluster headaches are absolutely brutal. My FIL had them & I know how devastating they are. I'm so glad the meds are helping.
Fingers crossed you get a good neuro. 👍
February 1, 2025 at 1:11 PM
Fingers crossed you get a good neuro. 👍
Only stopped by to tell you to get a new neurologist. In the UK, they know MS causes excruciating pain - Trigeminal/occipital neuralgia, MS 'hug'. Medical cannabis is prescribed for it. Hope the pain settles.
February 1, 2025 at 12:25 PM
Only stopped by to tell you to get a new neurologist. In the UK, they know MS causes excruciating pain - Trigeminal/occipital neuralgia, MS 'hug'. Medical cannabis is prescribed for it. Hope the pain settles.
It was yummy. We have already eaten a piece each.
January 20, 2025 at 11:40 PM
It was yummy. We have already eaten a piece each.
My Law professor gave me #HumanaeVitae to read in 1978. I'd been brainwashed from birth & sent to catholic religious schools from 5. It was truly eye-opening. I quickly realised I'd been lied to my whole life. Atheism was the logical conclusion.
January 12, 2025 at 6:13 PM
My Law professor gave me #HumanaeVitae to read in 1978. I'd been brainwashed from birth & sent to catholic religious schools from 5. It was truly eye-opening. I quickly realised I'd been lied to my whole life. Atheism was the logical conclusion.
My search continues. I could obviously get them reupholstered but that is extortionately expensive & environmentally bad!
January 12, 2025 at 6:08 PM
My search continues. I could obviously get them reupholstered but that is extortionately expensive & environmentally bad!
#GavinGiovannoni has always said #Oestrogen is neuro protective in MS patients.
January 12, 2025 at 6:06 PM
#GavinGiovannoni has always said #Oestrogen is neuro protective in MS patients.