Anyone else out there dealing with neuro stuff mostly on their own?

I have serious dizziness and brain fog 24/7 for 5 years now. 4 Neurologists, PT, and extensive testing but no diagnosis. I know exactly when it started after a viral attack but doctors don't listen nor take me serious. I am reconciled to living with chronic dizziness and pain rest of my life

Sorry my phone is acting weird and doing things I don't want to like post when I wasn't finished.
The neurologist took the list of my symptoms that I gave him and without even looking at it crumpled it up and threw it in the garbage. He then looked at me and asked if he could examine my left hand. I replied "No", gathered my paperwork and walked out. I have had several other Dr's actually try to walk out of the exam room when I would try to tell them more than one symptom. Except for the one dr who actually suggested that I should see someone at the memory clinic (this is the same dr who tried to walk out of the room on me a couple of days earlier when I tried to tell her my symptoms. I think the only reason she about faced and actually listened to some of my symptoms is because I brought my sister into the exam room with me and she didn't want a third party who she didn't know to see how she was treating one of her patients.) that she would make the referral immediately and mark it urgent. Since that one time when a dr has actually done what they get paid to do, I have been the one to do the suggesting of what the next step should be, what specialist I need to see, even down to what tests should be next. The only other dr who has been doing his job is my Gerontologist. He is the first dr who has fully listened to all my symptoms. It was supposed to be a 4 hour appointment with him and by the time he was done, we had been there 8 hours. He was the first dr to actually witness a full blown serious vertigo episode along with all of the visual disturbances that occur randomly , all three headache types, a severe photosensitivity episode that not only caused the muscles around the eyes to tighten harder than needed which then set off every other facial muscle to spasm and tighten up harder than needed. He was also able to witness an episode of almost full sensory input overload ( the skin was the only sensory organ that wasn't sending the brain extreme and weird signals). My brain felt like it had stopped working. I couldn't think, talk well, see properly, hear things due to the loud buzz in both ears, everything tasted horrid and all I smelt is an overwhelming burning smell. The visual disturbances got so bad at one point that I wasn't able to complete very many of the memory tests as nothing I was seeing made sense to me. This the first dr that I haven't had to suggest that we need to do more in-depth tests. By the time we left 8 hours after our original appointment time, I had a possible working diagnosis, a brain scan appointment and an appointment with the neuro-phscologist for more cognitive testing. I have even had to find my own ENT and get my family Dr to refer me for the unpredictable and so far uncontrolled moderate to severe vertigo episodes (4 different versions with each version having its own completely different movement sensation) that have lasted 30 minutes (the shortest) to 3 days (the longest one so far) and that to this date, 9 months after the first symptoms were noticed by co-workers have yet to be investigated by any dr even though I may have had or been experiencing them when I saw the dr.s. I finally had to be the one to ask for the referral to the ENT to start the investigation into the vertigo episodes. So I know what you are feeling. The only reason I have needed a dr so far is to make the actual referral to a specialist or tests and in my case fill out the forms that require the signature of a medical dr so that I can qualify for the disability benefits from my work and both governments (Ontario and Canada)

So sorry to hear this. I am unable to work for the most part as well. Unfortunately, we have to advocate for ourselves a LOT in the healthcare system. I had to stamp my feet this week to get an earlier appointment. If you are in dire circumstances, you’ve every right to demand urgent care.

I can definitely relate to you're situation. I have a frightening Neurological illness that has puzzled doctors here in Austin, TX. The doctors have given me lots of different medical tests and examinations, but they still haven't been able to find out what's wrong with me.

I believe that my only hope to beat this mystery, Neurological illness (& get 100% of my health back), is for me to go to The Mayo Clinic and try to get them to do a clinical trial for me.

If The Mayo Clinic is doing clinical trials, will you or someone please let me know?

Also, no matter how difficult it is for you to get treatment, please don't give up. Please keep fighting to get all of your health back, so that you'll live a normal, wonderful life again.

I can definitely relate to you're situation. I have a frightening Neurological illness that has puzzled doctors here in Austin, TX. The doctors have given me lots of different medical tests and examinations, but they still haven't been able to find out what's wrong with me.

I believe that my only hope to beat this mystery, Neurological illness (& get 100% of my health back), is for me to go to The Mayo Clinic and try to get them to do a clinical trial for me.

If The Mayo Clinic is doing clinical trials, will you or someone please let me know?

Also, no matter how difficult it is for you to get treatment, please don't give up. Please keep fighting to get all of your health back, so that you'll live a normal, wonderful life again.

Good luck with Mayo I contacted them and faxed all my tests to them. I was told to give them 4-6 weeks I’m glad they responded quicker but disappointed they reviewed everything that day and mailed a basic letter on Friday and I got it on Monday. Being a highly recommended facility and knowing I’ve been to 3 additional Surgeons after my failed back surgery. I was praying for at least some suggestions but no all I got was a denial letter. I called and they said if I had a doctor write them they would look at it again. Why not tell you from the get go you need a referral!

I am here trying to find help for my husband that has been dealing with stroke like symptoms, dizziness and weakness, and abnormal brain scans that the VA is ignoring. He’s been having the dizziness and weakness for years. The stroke symptoms started in March. April we found out that he actually had abnormal brain MRIs in 2022 and 2023 that we were never told about. Since then he’s had several more tests showing stroke and heart attack. Yet he still hasn’t been seen by a neurologist, had anyone go over the abnormal tests, or even been seen by his primary care provider since January 2023! He’s scared to death thinking he’s about to die and no one cares.