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Famous people diagnosed with neurological diseases
- Thread starter ToneAl
- Start date
Arnie Pye
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DigitalDrifter
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I thought that is what MS is.
Jonathan Edwards
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Interestingly MS only attacks nerves in the brain and spinal cord. CIDP attacks nerves outside the brain and spinal cord - in the arms and legs.
Snow Leopard
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CIDP is my worst nightmare.
Subtropical Island
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I just had a look at the Wikipedia page to confirm my presumption that it would originally have been called Stiff Man syndrome. Found this familiar sounding passage:
https://rarediseases.org/rare-diseases/stiff-person-syndrome/
The symptoms of Stiff Person syndrome sound a lot like what is diagnosed as a functional movement disorder:
fluctuating muscle pain, spasms, weakness and rigidity.
Testing isn't definitive.
If I developed these symptoms, I'd be doing my best to see a neurologist who is expert in SPS, rather than taking my chances with a neurologist who might like dumping people on the functional disorder waste heap.
Maybe the publicity as a result of Celine Dion's announcement might help reduce the functional misdiagnoses?
The symptoms of Stiff Person syndrome sound a lot like what is diagnosed as a functional movement disorder:
fluctuating muscle pain, spasms, weakness and rigidity.
Testing isn't definitive.
If I developed these symptoms, I'd be doing my best to see a neurologist who is expert in SPS, rather than taking my chances with a neurologist who might like dumping people on the functional disorder waste heap.
Maybe the publicity as a result of Celine Dion's announcement might help reduce the functional misdiagnoses?
Mij
Senior Member (Voting Rights)
Moersch-Woltman syndrome, commonly referred to as Stiff person syndrome, is an autoimmune illness that sees the patient’s immune system cause a dysfunction of the interneurons found in the spinal cord, said Dr. Stéphan Botez, a neurologist at the CHUM.
Botez said it can take a long time to diagnose the syndrome and described the disease as “sneaky.”
Usually, the first muscles affected are those of the abdomen, said Botez, followed by the paravertebral muscles. The problem can then spread — no one really knows why — to the lower muscles and result in falls.
Initial treatment for the disease consists of administering drugs to help the interneurons work more efficiently. If that fails, attempts can be made to neutralize the antibodies that are interfering with the interneurons.
“There isn’t really a cure for the illness, but usually we succeed in treating the symptoms — making them tolerable and keeping them under control,” said Botez, who has only encountered the syndrome a single time in 12 years of practice at the CHUM.
https://montrealgazette.com/health/...licting-celine-dion-are-manageable-specialist
Botez said it can take a long time to diagnose the syndrome and described the disease as “sneaky.”
Usually, the first muscles affected are those of the abdomen, said Botez, followed by the paravertebral muscles. The problem can then spread — no one really knows why — to the lower muscles and result in falls.
Initial treatment for the disease consists of administering drugs to help the interneurons work more efficiently. If that fails, attempts can be made to neutralize the antibodies that are interfering with the interneurons.
“There isn’t really a cure for the illness, but usually we succeed in treating the symptoms — making them tolerable and keeping them under control,” said Botez, who has only encountered the syndrome a single time in 12 years of practice at the CHUM.
https://montrealgazette.com/health/...licting-celine-dion-are-manageable-specialist
rvallee
Senior Member (Voting Rights)
Somehow, almost always: neurology, where immunology occurs.
Andy
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Selma Blair: 'Multiple sclerosis took my career down'
"Blair had experienced fatigue and speech disturbances since her youth, but doctors took many years to establish what was wrong.
Her unexplained health issues led to years of feeling low but she says she kept them secret.
"I was ashamed and concerned I wouldn't work again."
Doctors often assumed the problem was psychological.
"They would say, 'OK, what kind of trauma have you had?' 'We do think this is psychosomatic.' But without any real neurological tests."
When Blair was finally diagnosed in 2018, she felt "unburdened".
"It was a relief. There was a little bit of panic, like how will I have the energy to ever even deal with this?
"I had been down that road for so many years without a diagnosis that I did feel kind of hopeless still, but I was hoping that the diagnosis of MS would give me so many more options.
"It was an amazing, comforting feeling to know that there was a whole community of chronic illness or MS patients.""
https://www.bbc.co.uk/news/entertainment-arts-63792626
"Blair had experienced fatigue and speech disturbances since her youth, but doctors took many years to establish what was wrong.
Her unexplained health issues led to years of feeling low but she says she kept them secret.
"I was ashamed and concerned I wouldn't work again."
Doctors often assumed the problem was psychological.
"They would say, 'OK, what kind of trauma have you had?' 'We do think this is psychosomatic.' But without any real neurological tests."
When Blair was finally diagnosed in 2018, she felt "unburdened".
"It was a relief. There was a little bit of panic, like how will I have the energy to ever even deal with this?
"I had been down that road for so many years without a diagnosis that I did feel kind of hopeless still, but I was hoping that the diagnosis of MS would give me so many more options.
"It was an amazing, comforting feeling to know that there was a whole community of chronic illness or MS patients.""
https://www.bbc.co.uk/news/entertainment-arts-63792626
Canadian actor, Michael J. Fox, has had Parkinson's for many years. His foundation has raised a billion dollars for research into this disease.
ETA: research info from the Michael J. Fox Foundation:
https://www.michaeljfox.org/research-news
ETA: research info from the Michael J. Fox Foundation:
https://www.michaeljfox.org/research-news
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ToneAl
Senior Member (Voting Rights)
The biggest mistake in neurology is the belief if cant be seen in a scan then the problem is in the head.
Also i read that it takes up to 7 years for a diagnosis of auto immune diseases and probably longer if the diseases is serum negative
Bruce Willis diagnosed with frontotemporal dementia.
https://www.theaftd.org/MNLStatement23/
https://www.theaftd.org/AFTD-MNLStatement23/
https://www.theaftd.org/MNLStatement23/
https://www.theaftd.org/AFTD-MNLStatement23/
Wyva
Senior Member (Voting Rights)
I've seen the documentary about her. She tried stem cell therapy, where her immune system was basically destroyed with chemotherapy first, before the transplantation. It looked quite brutal and dangerous.
She says she feels better now but the disease is still not really gone for her. It's just not as bad.
Wyva
Senior Member (Voting Rights)
An interview in British Vogue with American actress Selma Blair, who has MS.
It can’t be an easy story to tell. Born into a Jewish upper-middle-class family in Michigan, by the time Blair was seven she had lost use of her right eye, left leg and her bladder. Her mother, a judge, feared Blair had cancer, but she was a complex figure (“though she loved me very much”, Blair says) and at times became frustrated with her daughter’s extra needs. Looking back, it was the ravages of undiagnosed juvenile MS, but at the time Blair was labelled an attention-seeker and dismissed by doctors. “If you’re a boy with those symptoms, you get an MRI. If you’re a girl, you’re called ‘crazy’.”
As a child, Blair would wake up in the night laughing hysterically. As an adult, the darker side hit: waves of uncontrollable crying that came out of nowhere. “I just thought I was a hugely emotional person,” she confides. In reality, her undiagnosed MS had damaged her frontal lobe – the equivalent of a brain injury. Blair would not get a diagnosis for another 40 years. “I looked like a ‘normal’ girl to them,” she says, “but I was Disabled this whole time.”
(...)
The past few years have seen Blair’s MS go into remission – thanks, in part, to the hematopoietic stem cell transplantation she received in 2019 – but her condition fluctuates. On a good day, she is laughing and out of the house with friends. On a bad day, she is vomiting, collapsed in bed. “Sometimes I can’t eat for days, and then when I can relax I overdo it and all the hunger rushes in,” she confides a few days later, settled back at home in LA. “I require more sleep than a bear in winter.”
As a child, Blair would wake up in the night laughing hysterically. As an adult, the darker side hit: waves of uncontrollable crying that came out of nowhere. “I just thought I was a hugely emotional person,” she confides. In reality, her undiagnosed MS had damaged her frontal lobe – the equivalent of a brain injury. Blair would not get a diagnosis for another 40 years. “I looked like a ‘normal’ girl to them,” she says, “but I was Disabled this whole time.”
(...)
The past few years have seen Blair’s MS go into remission – thanks, in part, to the hematopoietic stem cell transplantation she received in 2019 – but her condition fluctuates. On a good day, she is laughing and out of the house with friends. On a bad day, she is vomiting, collapsed in bed. “Sometimes I can’t eat for days, and then when I can relax I overdo it and all the hunger rushes in,” she confides a few days later, settled back at home in LA. “I require more sleep than a bear in winter.”