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

Please check for SS

Viola, I cannot relate to your issues but I do want to say how hard all of this must be to deal with, especially with limited support group. I’m going to add you to a prayer list because you are certainly in need of it. Keep everyone updated on how this progresses and bless you-

I am 7 years post stroke w multiple long term effects, and I've been on my own for 6 years! Multiple symptoms! I would love some help! I know Neuro confuses people, but for goodness sake! A little bit of listening and help could go a long way! Where are rhe experts?!

I have had some numbness and a few other symptoms. My second neurologist diagnosed me with Vitamin B12 deficiency and I’m on a very high dose. It appears to be helping. It’s been a long journey and I told the doctor today he saved my life! He’s incredible and I thank God for sending him my way. The sensitivity in my right hand had improved! I’m cautiously optimistic.

Viola, do you know what caused your symptoms? It sounds very distressing. I can relate.

Oh yes, can totally relate. You're not alone, nor are you crazy.

I relate. I was diagnosed with Neuro-Cognitive Disorder, NCD, last August. I think it was called MCI, mild cognitive impairment, from an earlier version of the DSM. The silence from my doctors is like a wall. They do not even want to discuss going forward. My PCP just shrugged his shoulders and said "Nothing we can do". It's unbelievable.
While I live amid my NCD now, it struck me last week to query the internet about who should be addressing this with me. The answer was a neurologist. I have a neurologist from an earlier stroke that I've seen for neuropathy. I checked their websites and yes, they do treat MCI and related dementia disorders. I've made an appointment for August and I'll see how that goes. I had to get to this point on my own. It's a lack of supporting infrastructure the medical-industrial complex has yet to put in place. Follow the money. If people aren't insured for long term disability, there aren't any dollars to chase to keep us out of those facilities when or if it turns to full dementia or ALS.

So glad you found an option! I pray they are able to help you. I’ve been advocating for myself and my parents for years. It’s a daunting responsibility. Best wishes with everything.

Oh I can definitely relate. When I saw my neurologist ( had diagnosed me with Parkinson's on little else mobility wise , except for my tremor that had already been diagnosed as Essential Tremors over 20 + years ago, in March 2023) on the 19th of December/23 all my neurological, cognitive and physical symptoms that had suddenly started back in October of 2023 had finally come to a head on Dec 14 causing me to be forced to take a medical leave of absence from my work and I was eager to talk to him about what I was experiencing. I thought, since most of the symptoms I was experiencing were cognitive and neurological he was the perfect dr to talk to. When I entered his office, sat down and preceded to pull all my papers that listed everything I was currently experiencing and had been since October/23 in varying degrees out of my folder, he looked at me like I had just grown two more heads. I started to describe my symptoms and got as far as describing what my legs were doing (only the second one on the list) and he stopped me there. He stated that I had restless legs and gave me a prescription for Levodopa CR to take at bed and then just sat there looking at me. I thought that since he was sitting and looking at me he was waiting for me to continue so I did. Boy was I wrong. As soon as I tried to tell him another one of my symptoms ( according to the research and information on all the Parkinson's websites and YouTube videos I had read and watched after he had pronounced that I had Parkinson's and had probably had it for at least 20+ years and then left me hanging with no further information. I had been able to connect most of my symptoms I was experiencing directly to the Parkinson's. There was only 1 problem - most of my symptoms usually didn't appear in Parkinson's until much, much later and the progress of them usually didn't happen as fast as mine did. Other than that fact most of them fitted perfectly with the Parkinson's diagnosis he had given me so of course I figured he was the perfect dr to talk to about them) he immediately interrupted me and said "I am here for your tremor only" And every time I started to describe another symptom, he would instantly interrupt me with "I am here for your tremor only". He shut me down and wouldn't listen to a word I tried to say and when I handed him a paper that listed all the symptoms I had been experiencing since t

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)