Orphaned M.S. Patient

[CrazyCatWom]

Ever since my neurologist moved on to exclusively pediatric neurology, orphaned is how I have been feeling. I'd had my last appointment with my neurologist in the beginning of June. Beginning of July, I'd called the Neuroscience center to ask 1. Did Dr. -------- order the blood test he said I needed? And will scheduling my 6 month follow up appointment be like 2020 where I'm on a list and you all call me with the appointment date with the new neurologist, or can I schedule that appointment now? I was told I'd be transferred to Dr. --------'s nurse's line an d I could ask her, and y es, his staff was still at the Neuroscience Center. After transfer I didn't talk to the nurse because she is unavailable. A message for her was left, and she'd supposedly call me back.

Never got a call.

So, I called in August. I was told that while I wasn't considered a "new" patient, December was already booked up for the new neurologist. They could get men into the new neurologist 's schedule in January, and BTW, why was I seeing her?

::::groannn:::

Since my A/C's failure to work for 3 weeks brought back several of my M.S. weirdness and I wanted to talk to a neuro about it. Anyway, I was happy to at least get in in January, but no word on my annual MRI which also should have been scheduled for December even if I wasn't seeing the neuro until a month later. Oh, well. New doc, new way of doing things . . .

Friday afternoon I got a call from someone at the Neuroscience Center. The January appointment date i sn't a suitable date, so I'm being moved to the end of March, 2022. And I will be seeing a Nurse Practitioner who will pass on all important info to the new neuro and she may want to see me at some point for an hour. But the NPs will be doing a lot more. (oh! This is how things will be done from now on!) See, the new neuro is really, really, REALLY good, and another neuro and she's taken on ALL of Dr. --------'s patients so they are really busy.

Okay. But how did Dr. -------- ever see all of us, do hospital rounds, do research, AND speak once a month to a diningroom full of M.S. patients and caregivers without passing it all on to NPs?

[bxrmom]

I"m sorry you are going through this and won't be able to see someone until March. Hopefully the NP is a good one that can help you. I hope your a/c has been fixed by now and you are feeling somewhat back to normal. Keep us updated on how you are doing and how things go with the NP and Neuro.

[CrazyCatWom in reply to bxrmom]

Oh, yeah, the A/C is back and running! Fortunately, it was a blown motor, so we didn't have to get a second mortgage to pay for the repair. Mr. Johnathon T. Fuzzibutt, Adventure Cat is so happy to be able to wiggle under my covers and make biscuits before settling in for a nap with me. With no A/C, he was just a rug in the middle of the floor.

[Kenu]

Sounds crazy! I would be a little fired up😡 Hopefully it gets better 🙏👍😉 Ken 🐾🐾

[StacyHayward]

That’s awful!!! Is there another neuro you can see?

[CrazyCatWom in reply to StacyHayward]

That is a question I've been pondering. The only other neurologist with the University hospital system ((where the Neuroscience Center is) is the other neuro taking on Dr. --------'s patients, and ironically is the neuro who 26 years ago, diagnosed me with M.S.! However, he was already loaded down with patients before he took on some of my fellow orphaned patients. And word has gone around that he is not accepting new patients. (And, yeah while I was told I wasn't considered "new" that is exactly how I'm being treated.) So I've been stretching the feelers out toward another healthcare system entirely (which all but my cardiologist are with). But the odd thing is with this option: l've never heard anything about this system's neurology department except my former neuro.ogist was THEIR pediatric neurologist before he retired and went to work for the Neuroscience Center. There is one other healthcare system (the one I was actually born in!) where I have heard of and met their neurologist. But my insurance doesn't cover them.

[BlanketTime1]

nope, nope, nope. don't be like me and let people push you around, trying to be understanding and polite! i only see an np for stuff i already know about, like if i just need medication refills, and that includes my primary physician. how much more important is it for you to see an actual doctor with regards to your neurological condition?

i can't with these people🤬. when i first developed dystonia, i'd never heard of it and had no clue what was happening to me. the jerking was so bad i felt like someone was stabbing me in my shoulder. the neuro (since fired) ignored me for weeks and his nurse acted like i was inconveniencing her. i was pretty patient until one saturday evening when i thought, 'i'm struggling, in pain and my arm won't stop moving. i bet he's having a nice relaxing evening while i suffer,' and i got angry.

they allegedly have a duty of care to treat you, which means timely mri's and office visits with a specialist. it sucks when you find a doc you like and insurance or pregnancy (my doc retired) or whatever prevents you seeing them. we all know how arrogant and insufferable neuros can be and it sounds like you might have to find another. hopefully, they'll behave though.

i'm glad your air is back and you survived.😀

[goatgal]

Sadly, this is the sort of typical run around that's all too common in some practices, including mine. Evidently there's no difference between a NP and a neurologist, so it's not clear to me why neuros are needed at all. I don't mean any disrespect to NPs. That belongs to the MDs and perhaps the insurers driving the issue. I'm sorry you are dealing with it because it surely adds to your stress levels.

[pamgarner]

if i have learned 1 thing from dr.if you want an appt start 1 year out! urrgghhh

[Neworleanslady]

Is there another neurologist you can start seeing? At least in the meantime. How frustrating! Once the neurologist becomes established in that spot maybe it’ll get better.

[Mollyabigail]

CrazyCatWom, I am so sorry! You probably do feel orphaned. Doctors ....... just don't understand, nor "want" to understand. (some anyway). I can loan you my Pitbull/husband. You can "sic" him on your new neuro and the NP! He becomes a mad dog when this sort of thing happens to me. I hope it works out. The 'not returning your call' thing - thought that was just a rural Mississippi thing. I'm sorry. God bless you!

[CrazyCatWom in reply to Mollyabigail]

Oh! Not returning calls is also a New Mexican thing. But I was spoiled by my previous neurologist. I got a call once at about 9:30`p.m. on a Sunday night. I answered, prepared to rip a telemarketer apart, and it was my neurologist! He was apologizing for his assistant not returning my call. And I learned that's just the way he was. If he needed to call you unless it was something he perceived as really imortant/urgent, he'd call you on a weekend afternoon or night, or on a holiday. Those were the times he had available to do paperwork, write reports, return phone calls or call patients for other reasons (his analysis of your latest MRI. I could count on him to do these things so much so, if Ingot a call from my pharmacy telling me they hadn't gotten an authorization for a med from my neuro, I could tell them to check the phone or fax number they used. Because I knew if they couldn't get a hold of him, they were using the wrong numbers. Had they been the correct ones, he would have responded immediately! And I had to email once, as per my cardiologist request that I contact all of my doctors about an issue and update them. I didn't get an email resonse from my neurologist. I got amphone cal, seemingly within seconds of me hitting SEND! None of my other doctors have been anything like my former neuro. I was just very fortunate to have had him.

[mrsmike9]

Sounds crazy! I am still with my original neuro but I ALWAYS see the NP. It's a good thing, too. My dr. is the MS specialist in my city but he has the personality of a potato. I'd much rather talk to the NP as she SEES me. He sees the disease.

Have you asked to be put on a cancellation list? If someone cancels you might be slotted in earlier.

[CrazyCatWom in reply to mrsmike9]

Yeah, I'm on the cancelation list. I've dealt with some great NPs in other areas, such as pulmonology and cardiology. But not so much with neurology. They find M.S. kind of scary, and will dance around it. Just a little frustrating.

[twooldcrows]

oh my can you call your old office and ask them who to talk to about this ....so sorry ....

[rjoneslaw]

the way get around seeing a np is to tell them your insurance wont pay for you to see a np.

a lot of insurances will not allow that

a lot of dr just give patients to the np you have to tell them you dont want to see a np. also always when you make your follow up tell them you want the dr