-
1 in a million. Moyamoya Diease
It was confirmed I have Moyamoya disease last week almost a year from my first stroke. 18 months from my first neurological symptom. Moyamoya is a rare progressive neuro- vascular brain disease. The arteries in the brain close off and to compensate tiny vessels develop. The tiny vessels try and keep blood pumping and get…
-
Hi, my name is Sonic63! I've just bought a hidden disabilities lanyard
I just bought a hidden disabilites lanyard so I dont have to explain my health problems to people who know nothing about it and I feel like I am fighting back at last.
-
Pain the back - spinal stenosis
Hi all new to this type of thing, so I hope I,m doing this right ha ha. Anyone on here that suffers with spinal stenosis i've just been diagnosed. x
-
Diaphragm palsy
Is there anyone out there who has had a shoulder operation and ended up with diaphragm palsy? If so, did you ever find out why it happened? I had my operation almost five years ago and I’m still in limbo. They have suggested parsonage Turner syndrome but it’s never been confirmed or treated, if either is possible.
-
Thought start new discussions. I've got rare or undiagnosed conditions
I've got rare or undiagnosed conditions but can't address it because way things or stuff is right now
-
Chronic, multiple, life-limiting illnesses; no support; what to do?
The third thread I'm starting I think but, again, will keep it short and simple to start with, despite the complexities I am continuing to endure without relief, without support, without any hope? Can any of you relate to having all of the following at once, and if so, how do you manage, what are the best treatments, are…
-
FND and brain injury from carbon monoxide poisoning
Hi, my name is Celestite! I was wondering if FND can be triggered by carbon monoxide poisoning or any toxic substance.
I was breathing low level carbon monoxide poisoning for a couple of months and
did not know. CO alarms do not sound at low level, my alarm sounded when it reached
a very high level and I collapsed. This…
-
Adrenal insufficiency and severe brittle asthma
HI there all I'm wondering if anyone else has become disabled or in my case further disabled with bad side effects of prednisolone and withdrawal side effects affecting adrenal function and diagnosed with adrenal insufficiency? I have been diagnosed as severe brittle asthmatic the past 13 years with numerous emergency…
-
Mystery skin condition
So I am still waiting on this hospital prescribing sonething that actually works for this smelly skin condition and removes this parasite or whatever it is. The new shampoo they prescribed did absolutely nothing. The antimicrobial cream they gave does nothing. However the T gel, brown one for flaky scalp has some small…
-
Hi, my name is theninjaturtle!
Hi all I am a newbie so looking forward to getting some advice or chatting and hopefully I may possibly be able to give advice or help. I have recently been diagnosed with quite serious spinal stenosis which has been missed by doctor's for 16 years.
-
Dyslexia and dyspraxia. Can you have dyslexia, but be able to read and write just fine?
Hello everyone! I've recently sought out help at uni because I think I might have ADHD (even though I'm not hyperactive) Long story short, they've sent me for a dyslexia screening to rule that condition out This is great, but Ive never thought I'm dyslexic as I can write, spell and read! I struggle to read in the sense…
-
Can dyspraxia cause memory problems?
can dyspraxia cause memory problems?
-
NHS Dental implant cost help?
Hello. I'm currently under my hospital community dental team. I have Thyrotoxicosis, post subarachnoid haemorrhage ten years, spondylosis, complex post traumatic stress disorder, and post heart attack one year. Outwardly I'm a slim and healthy looking 54 but my teeth are falling out due to my conditions and medications.…
-
Hi, my name is Isis! I got HBP after the Moderna vaccine
I got HBP after the Moderna shot & a homeopathic doctor had warned me not to get vaccinated for the side effects I can experience after the COVID vaccine.
-
pins needles an numbness in my fingers
at the end of last year i started to have pins and needles in my fingers and they kept going numb. i went to the drs and had a blood test. i was told their was nothing wrong. i put up with it until april when it got worse and my hands started shaking which is very annoying. in the meantime i had changed drs. i was given…
-
Thinking about starting a meetup group for those with undiagnosed/rare conditions
I am debating whether to start one or not as I don't know if people would be interested. Would be based in the south east of England and monthly and free. Doing things like the following: discussions, eating out, day trips
-
PVNS in knee, quality of life?
Hi there. I went for an MRI believing I had a meniscus tear. I only found out I had PVNS when written into a letter sent to my GP. The consultant really couldn't be bothered with me tbh. I was the last to be seen and he was running 50 mins behind. All he said was it was arthritis and it would degenerate. I asked about long…
-
Checking in, How are you all?
It's been a long while since I was last on her. What has everyone been doing to keep busy during this pandemic time? What are your plans for 2022?
-
Anyone had a cystectomy?
Hi I'm looking for advice regarding having a cystectomy if you have cerebral palsy. My dad has bladder cancer and we are finding the choosing the correct treatment alongside the consultant is proving difficult. If you have any advice regarding the operation and after care, we would be extremely grateful . Thanks
-
Cervical Dystonia
l have this type of disorder which affects my daily life regularly. lt all started when l was 14 years of age. When l felt something very strange just under the base of my brain. Which l did not know not what this was at the time? lt is called the "Basal Ganglia" that controls the movements of the bodies muscles. As time…
