neurology

#neurology

I have come to the conclusion doctors do not care. I have had longstanding neurology issues, but always get dropped as a patient.

Last fall an oral surgeon injured my face. Again, I was sent to a neurologist. She diagnosed me. I was not abusive. Life has been pure hell. I am by trade a broadcaster. I am now stuck in a job I hate, and struggling to do because I am no longer able to speak correctly. Neurologist referred me to a neuromuscular doctor. They declined the referral and said they were not taking patients. I reached back out to the neurologist and was informed I was being dropped as a patient.

I asked questions, nobody would speak to me. I was just told to get a second opinion. Go to family doctor and get a referral to a neuromuscular doctor and they decline the referral. Other neurologists either say not taking new patients, or just don't want to help.

I feel like the reality is I am being turned away due to another doctor injuring me.

In America, patients should not have to beg for healthcare.

And how can you live a productive life when you normally function properly and doctors refuse to help. They refuse to fill out disability paperwork. I have literally been told once before to just suffer in silence. At this point, death is preferable.

So. I'm having investigations done because a brain MRI showed increased cerebrospinal fluid pressure. This might mean I have idiopathic intracranial hypertension however I'm aware that the MRI alone doesn't necessarily mean I meet the full criteria. I was referred to a Neurologist. Their triage assessment process takes 30 days which of course I was worried about just because I didn't know if they would accept my referral or how long I might then have to wait for the appointment. Thankfully I just received a call and I've got an appointment in two days time. This is amazing! However I'm also now worried that they view this referral as particularly serious and what that might mean for me. Overall I'm relieved to have the appointment. I'm very grateful for access to a Neurologist.

Does any one have a doctor they can Recommend? One of my doctors think I have MS and I'm looking to rule it out. I am around the Pennsylvania, New Jersey, New York tri- State area in the US. #MultipleSclerosis #Undiagnosed #neurology

Hi, I'm looking for others who have this rare type of benign brain tumour. What are some of your symptoms and what has been your journey in getting help? I have a lipoma in the middle of my brain and have headaches, limb weakness and some other issues but can't find anyone to relate to and it's lonely being part of the 0.1% thank you 🤕 #BrainTumor #braintumors #SeizureDisorder #neurology

Attention: European friends! Please share 🤗

Despite the higher prevalence rate in women than in men of many neurological disorders (e.g. ADHD, multiple sclerosis, migraine, Alzheimer’s disease), gender stereotypes can have a negative impact, leading to underdiagnosis, misdiagnosis and delayed treatment. Furthermore, while women experience neurological disorders differently to men (symptomatic profile, pace of progression and effectiveness of medication), women are often excluded from research.

In addition to the experience of the patient, the majority of informal caregiving roles are occupied by women who are also burdened by the gender divide.

This survey has been developed with the aim of identifying, reporting and beginning to address the varied challenges facing all affected by neurological conditions, either as patients or caregivers, from diagnosis to care pathway. Data generated through this survey can be used to address the unmet needs and challenges facing all affected by neurological conditions.

The survey is open to anyone over the age of 18 who is living with a neurological disorder, or who is carer to someone living with a neurological disorder, that resides in Europe.

The survey can be accessed at
www.surveymonkey.com/r/JQW27L2
from March 8th.

Deadline for completion of the survey is Tuesday, April 19th.

#InternationalWomensDay2022 #womensupportingwomen #womensday2022 #ADHD #Migraine #neurology #nd #neurodivergent #Europe

@ADHD-Women ADHD, ASC & LD Belgium

#Migraine #Headache #longhaulcovid #longcovid #SideEffects # debilitating #Migraines #long haul Covid #side effects #long Covid #darkness #sumatriptan #Baclofen #neurologist #neurology #Brain # brain meds

TRIGGER WARNING, Eating Disorders, PTSD, Flashbacks and Mental Health Recovery are all mentioned.

So, I have cerebral palsy. It is mild, but I still can definitely struggle with my mobility quite frequently. Before my recent relapse, I was struggling with headaches to the point in which my consultant prescribed me Tramadol and referred me to neurology. Of course, my recent relapse has made this worse.

Not only have I relapsed in terms of my eating, which I have been doing incredibly well with since February, I have also fallen back in terms of my frequency in incidents of self harm.
The main reason I will apply and offer my understanding to all of this is issues surrounding my family. Although I am surrounded by people across various social media sites and also in the rehabilitation unit I currently live in, I just kind of feel alone. I put this down to a serious lack of acknowledgement or accountability from my family as to why my current mental health team believe that I have PTSD or CPTSD (to be specific). I had a massive falling out with all three of my family members that I lived with before being admitted into hospital this year and now I feel like I have been dropped.

I have also found out this week that I will not be coming off my section, and will remain in hospital against my own will (it has now been a year and a half).

This all has caused a huge knock back in terms of my recovery with both using self-harm as a way of coping and also a lack of self care, mainly eating.

I am writing about this, because part of what makes me so incredibly self-conscious about my body and appearance is the fact that I have cerebral palsy. Not only this, but it has been worsening in the last few months, hence my new referral to orthopaedics.
Not only does having a clear physical difficulty make me much more self-aware of my body and how I look, it also means that when I do lose a significant amount of weight due to my mental health struggles, it means that I cause a lot more pain to myself, as my muscles are being worn away as my weight plummets. I can't believe how incredibly negative I sound, but I feel like here I can truly be myself. No hiding, like I do on Instagram and Facebook and whatever else. This is more of a diary to me.

#chronic dizziness #ChronicPain #CerebralPalsy #Headaches #neurology #ChronicHeadaches   #EatingDisorders  #AnorexiaNervosa #Recovery   #recoveryisnotlinear   #Disability  #ChronicFatigue #MentalHealth #PTSD   #Depression  #dissociativeamnesia  #dissociativedisorders

Honestly, I love the nature sounds my TBI left me with so far! Cardinals were always my favorite bird anyway so I often feel one is near me over my shoulder, and I do like the ocean a lot too! Wonderful sounds of God's creation that no one else around me is hearing yet I can visualize it, and that helps calm me. Lately? It's been a field of crickets on a early Summers night:) That sound helped me feel warm in my bed in the dead of last Winter and it's still going strong. Cozy!
I'm an inquisitive person, so I wonder if in my upcoming neurology visit if I can invite my Neurologist to hold a stethoscope to my ear to see if he can hear these sounds too for himself?? They're too pleasant to not share with others, plus I want to know if it's possible!😁 #neurology #TraumaticBrainInjury #Seizures #ComplexPosttraumaticStressDisorder

I was hoping to heal by now but, nope, but I was often good at denial before. I feel like 'Frankenpatient' when I see my neurologist (I fell and he caught me in consultation, as if baby's first steps), as if I'm a toy from the land of misfits or one of those grotesque, mutilated toys that crawled from beneath that terroristic neighbor-kid's bed long ago on "Toy Story" (friendly but creepy, so you wouldn't know it at first). So, with this throbbing pain and strange bodily cracking noises, continual seizures, multiple brain injuries, etc (my list is long), I'm accepting my limitations because its slowed me down. I'm an active person. I like to be. Sigh. This is not the way I want it. The good side is that its making me appreciate what's important, and understand clearly what I always wanted to, love and trust more like I wanted (the ones I should) and set boundaries with those I should have...God answers many prayers every day like I always wanted to. He always was as His child in Christ Jesus. Acceptance is making me feel better. It helps me work through CPTSD, too. I'm not wearing out as much as I did when I 'kicked against' things/emotions so much, nor am I afraid as much, but accepting things so I can reroute to something realistic and make actual choices, move forward. The path of least resistance. Truth is I AM worn out already but this feels better now and I'm noticing growth this way. God is faithful:) #BrainInjury #Seizure #neurology #ComplexPosttraumaticStressDisorder

Anyone with chronic back pain ever experienced this before? I have felt like my spine has been compressed too tightly. it’s been causing me severe pain. maybe a 8/10. it’s also making me feel ill. I thought maybe I was about to have diarrhea, and I had to hop off the toilet to puke. after I puked I felt better, but the back pain still existed. it was shooting up and down the spine. I learned a new stretch where I leaned over as if to touch the floor with my legs apart. I started to swing up and down gently but with pressure, and I was able to pop my entire spine from the bottom up like butter. it was amazing. so try that if you’re feeling too much pressure. I couldn’t sit still. been using ice. went to the chiropractor and got and adjustment. I barely made it there because I felt so dizzy. he did neck traction involving the pulling of the neck horizontally to my body. it felt like my neck had someone been stuffed into my torso, and he pulled it out and straightened the spine out. it felt so good, but it was shocking. I drove home and had a rough time because I started feeling sick again. Got home and went to the toilet. thought I might poo, but I had to hop off again to puke. what is going on? I have severe nerve pain, so is it related? this is getting old. 5 years and counting. #BackPain #ChronicPain #chiropractic #neurology #helpme #CheckInWithMe