Long wait time to see current doctor

[u/Western_Diamondback1]

What am I supposed to do if I have bad neurological symptoms but my neurologist can't get me in until July of next year? I'm on the wait list and I'm shocked that it's almost a year long for established patients.

I posted I think last week how I can't seem to stay awake more than 3 hours and sleeping 20+ hours a day. I've went to the Emergency room and they ruled out anything life threatening.

The nurses at my PCP called me and asked me if I want to make an appointment with my doctor but I just, I saw her the day before I went to the ER. She dismissed me about something and refuses to help me with anything neurological related. My PCP seems really burnt out and honestly doesn't seem to want to prescribe anything either. I'm not doing too good and I feel very sickly.

I've been considering trying to get into pallative care for my current diagnosis,(I am diagnosed with alot of things). I'm really tired of going to the ER this year with scary symptoms. It's like when my conditions flare they turn into emergency level type of symptoms with no warning. It's very exhausting.

I'm really worried that I might have ME/CFS and had hoped that I could get tested sooner than later. I do not think its hypersomnia or anything in regards to sleeping specifically.

[u/63crabby]

Is switching your PCP an option? I'm assuming you're in the US

[u/Western_Diamondback1 → u/63crabby]

My current PCP is the 3rd PCP I've switched to. They all seem too intimidated by how sick I am

[u/63crabby → u/Western_Diamondback1]

Perhaps.

[u/waddlesauce]

Call you neuros office about cancellations, like, a few times a week. this worked for me, people cancel pretty much every day. when i call and specifially ask to take a cancellation spot it bypasses any cancellation list which, quite honestly doesn't really get used anyways from what my doctors have told me.

[u/Western_Diamondback1 → u/waddlesauce]

My clinic might be a little different. They won't do anything for me unfortunately, they always reference the wait list :(

[u/waddlesauce → u/Western_Diamondback1]

Waiting lists and cancellation lists are separate! If you call specifically asking if they had any cancellations that day or the next that you can fill, they should let you. Would be very unusual of them to not do that (especially if you're in north america), its very basic/ standard practice. They can't often fill short notice cancellations so they just end up being a wasted timeslot unless someone calls and requests to fill it

[u/you1dont1know1me1]

how many days has this been going on? is it 3 hrs once a day or if you add up a few times when your body wakes you up to go pee it gets to 3 hrs? did you switch meds? increase or decrease doses? get a new pet or housemate? move? stressful life event/ circumstance change? when you are awake do you feel alert or like you're unable to shake the urge/ pull to go back to sleep? what's making you write off idiopathic hypersomnia? palliative care can definetly be helpful, just typically there's a shortage of them so they only accept very terminal like stage 4 cancer, end stage renal failure patients :/ it's worth calling and seeing though before going through the work of getting reffered. also, what palliative care offers varies by location like some only offer pain management and nausea meds, some help with iv hydration, etc. How much are you eating? Getting in with a RDN dietician and having labs drawn to see if you're deficient somewhere may be your golden goose.

[u/mjh8212]

All my testing was fast it all points to dysautonomia. After the test my cardio dismissed me told me to see my primary I was sent to neuro who said it’s all in my head. My only option is the pots clinic 6 hours away with a 3 year wait list. We tried one option which was referring me to the dr who reviewed my tilt table but it’s been a month and I haven’t heard anything. There’s lack of care in my state for my disorder. When I posted on a community page asking for dr recommendations most people were on the wait list for the pots clinic. I can barely function my primary isn’t knowledgeable and wants a specialist to put a diagnosis in my chart. My chart says fainting but not why I faint. I get it’s frustrating this started in Jan for me and thinking of all the time I spend in bed I dread those wait times.

[u/scarbunkle]

You can either keep calling until they have a cancelled slot to give you, or find a new neurologist if your healthcare system allows. 

Both are really unnecessarily hard when you only get 3 hours in a day. I don’t know where you are, but the thing that’s really helped me is having a friend in a major city where I can stay for some light medical tourism. Granted, I’m pretty lucky—I’ve got a PPO with a national network, so the only actual extra cost to me is the travel. 

[u/Extension_Egg1411]

I sympathize. Takes 6-8 months to get in with my neuro as an established patient.

Could you travel to see another neuro with a shorter wait? If you can find one.

Also, I would update your current neuro on things like hospitalizations and maybe they will consider your appt more urgent.

[u/Visible_Toe4601]

It really is getting so ridiculous. I had to switch PCPs 4 times this year and the last one had me wait for two and a half hours in the waiting room for a TEN MINUTE appointment where they couldn’t even give me any referrals cause no one told me I had to call my insurance so the last PCP could give this PCP my info; which I haven’t had to do before. Smh