Can you just ring your neurologist? In which case, God Bless America.

[Thinkimjob]

How often you do talk to your neurologist? I read stuff here, and it's all "call your neuro", "ask your MS specialist" etc

Is it different in the USA? Down here, you can't just call your neuro; you'll get the receptionist, and you have to book an appointment. And it won't be next week. If I had a numb foot and I rang my MS woman, then I certainly wouldn't get any advice.

Sure, you can call, but they'll ask you to come. That's usually $180 a pop, plus travel. And that's if you have private health insurance, otherwise on public health you'll be waiting, waiting, waiting...unless you're really terribly sick.

I've had more or less immobile knocked back for immediate help at the ER at the local hospital, having lurched valiantly into the waiting room. "Come and fill in these forms, sit over there, and wait. A doctor will see you when one is available."

"But I can't really walk. At all."
"Then you should have called an ambulance," said the cranky nurse. Fair call. Not kind, or compassionate, but fair do's.

Kiddies with mildly sprained wrists got in before me. Still had to pay the full price for a "private doctor".

I know your average PCP (general practitioner in Australia) isn't meant to be, and isn't pretending to be, an MS Specialist.

I'm not a doctor, and I'm not blowing my own brass instrument, but even my doctor happily admits I know a lot more about MS than she does. Mainly 'cos I have it.

Specialists here are much more expensive than doctors. They're always telling us how bad the US system is and how gosh darn lucky we are down here, but if you can actually talk to your neurologist, and report what I, being an old-timer, would call minor symptoms, then you are miles ahead.

[J-Bo]

Hi Thinkimjob. I can't speak for everyone in the U.S., but I am able to call my doc's office and leave a message, and then either a nurse or a physician's assistant will call me back. If I left a question on their voice mail, they ask the doc before they call me back with the answer most of the time. Less often, the doctor will call me directly.

Also, they have a patient portal where I can type my message/question, and they usually answer me within 24 hours. I get a notification of their reply via email. I prefer this way. The patient portal also has lab and image results, past and future appointments, and when things like mammograms are due.

This is the way healthcare is going. I can tell you that with some confidence because I work for a healthcare software company. The U.S. government is dragging healthcare providers into the 21st century. Yes, it's a headache for providers to get there, and some of them are complaining, but it's paying off for patients already.

I'm sort of surprised that Australia isn't ahead of the US in this respect, as most everyone else in the world usually seems to be. But it's coming, and it's a good thing.

[minnie76]

Hi Think,

I guess it depends, I'm in Canada. Although I'm still in limbo..my neuro (who also works out of an MS clinic) is pretty good with "squeezing" me in when I have a new symptom. He's even called my cell back a few times when I had a question or a concern.

MY neuro-ophthalmologist also said he can usually squeeze me in if I get blurry vision or a black hole in central vision again... if he can't then I'm to go to ER right away.

Don't know what system is better...but I think how the docs run their offices makes a big diff.

I do feel very lucky with the medical system where I live. I was told that Ontario has a mandate for MRI's...the more serious it is, the faster the appointment. I've never had to wait more then a month for a brain MRI.

Take care,

Minnie76
DX with TN
Still in Limbo

[angel22_99]

Don't worry, we here in the US will be right there with you soon, we just "fixed" healthcare, LOL (no one throw things at me please)

When I need to ask my neuro something, I leave a message for him at his office and he will call back within 24 hours. He usually blames my problems on my weight, but that's a whole different topic!

We also have something here in the states called "concierge care." This is mostly with general practitioners (and I have seen a pediatrician do this), and I am actually considering springing for this for myself and my family.

What it is, is you pay your doctor a yearly fee--I have seen the fee from $700 to $1,100 a year, and for this you get unlimited access to the doctor/next day appointments. Supposedly, you can call and speak with your Dr any time of the day or night, have email access to him/her, or Skype any time you need.

Insurance doesn't cover this fee (don't know if it's tax deductible or not), but if the DR is in your insurance network, you can use it to pay for the actual treatments.

[Alicious]

If I call the neurologist's office, I leave a message and get a call back in the same half of the day from his medical assistant/physician's assistant (depending on which neuro, I switched), who has already consulted with the neurologist. If they think I need to be seen it is that day or the next depending on what is going on. If they don't need to see me but still want to treat, they call in whatever needs to be called in to the pharmacy, etc.

If I stumbled into an ER barely able to walk, someone would race up with a wheelchair, I'm sure. Whether that is proper patient care, fear of being sued if I fell (yay litigious America), or some combo I have no idea, but come on. Human decency would be to help you, in my opinion.

That being said, since treating a flare doesn't actually do anything to impact the course of the disease (I know you know this), it's more of a courtesy/comfort thing to get a call back with help than anything else in most cases. I hear about people here who can't get their doctors to call them back at all, so I'm not sure if my doctors have been the norm or if I just lucked out.

It sounds like we have easier access to specialists than you do, but a huge number of people here have no access to any sort of care at all without spending more than they make in a month. The grass is always greener, I guess; both systems, as currently operated, have good points and bad points.

[football-mom]

Actually yes. When I have problems I either call and leave a message with the assistant, or more generally now I will fax a note in because I'm better with the written word and don't forget problems I want to discuss like I do when I'm having a verbal conversation (I get distracted and forget). Then that evening or the next my neuro will call me back personally and we will talk.

I think the big MS centers will have you talk to a physician's assistant or something like that, but I always get to talk directly to my neuro within 24-48 hours unless he's on vacation or something. I think I had to talk to an on-call neuro maybe twice in all this time.

[AnneLouise]

I live in the US and I don't call my neuro. I see him twice a year only because of the medications I use. I wouldn't see him if I didn't have to. There really is nothing he can do.

I guess the neuro should know any changes, but my symptoms don't come and go anymore. They just get worse. I think people will say "call your neuro" because they are not drs. I would get the receptionist as well and I would have to make an appointment. Not happening.

Actually, I feel like my doc's cash cow. He will continue to make money as long as I am taking medications. Like I said, that is way I feel. And I like him, for the most part.

[mjan]

Okay, I tried to answer this earlier today, but got cut off for some reason.. duh!!! LOL

MY experience is that a nurse triages phone calls. You can leave a message, they prioritize importance and call you back..or.. now I can leave my doctor/PRIMARY an email and her MA (medical assist) reads them, checks in with the doctor and writes me back.

Now when I had a cancerous tumor both my primary doc and later the surgeon called me with Ultrasound and CT results.

A general neuro who put MS back on the table called me when he got back into the country and learned I was reacting to a med he put me on and ended up in ER. He helped me get admitted to inpatient. BUT he doe not have a 3k plus patient load like the MS specialists do.

We have fewer MS specialists so they really depend on their PA (phy assistants) and RNs to handle a lot of follow up. Of course they consult with specialist as well.

Again, sorry for what you are experiencing. I keep saying, this isn't life threatening so I can wait. If I suddenly couldn't walk, YES that would get their attention more quickly.

Jan

[Tomjadg]

I'm pretty lucky with my Neuro. Although I meet with him only three times a year or so, I call fairly often, and get one of his assistants, who call me back fairly quickly after they check with him. The girls there are excellent.

The MRI is down the hall from him, so I get a brain scan, and then go down the hall for my Ty infusion after he checks the scan. The infusion nurse schedules everything for me.

[Marco]

My neurologist realizes that my wife and I make sacrifices to keep her as our doctor. She doesn't take that lightly or the trust we put in her. I can directly email my neurologist, but certainly don't abuse the option.

Instead, I use the nurse's line and that works well. The nurse is proactive and checks her messages between patients. If there are emergencies she discusses them with the doctor and handles them. I also have the option of showing up to the clinic and they will work me in. They can even get me IVSM the same day since they have an infusion clinic on premises.

[Special Kay]

I email my neurologist when I have a question and she gets back to me personally within 24 hours. If it's more involved, I guess I would call by phone or schedule to see her (I'm there every month for infusions anyway - the docs often will stick their heads in the infusion room to say hello or speak to patients).

My PCP is also available on email and I always hear back in 24 hours but sometimes it's a PA or RN who responds.

[rdmc]

My GP belongs to a large medical group, and they hand you a card at every appt. with the phone number that will put you in touch with a physician in their group. You can call 24/7. My insurance also has a 24/7 nurse line you can call.

My neuro has a dedicated line for his nurse. So when you call and they go through the options, you just choose the prompt for the nurse and you will always get to speak to the nurse who will convey your question to the neuro. There's one thing about my neuro I really like. When I go for an appt., he's the one who comes out to call you back, and he alone is who you have the appt. with, no nurse questioning you ahead of time, etc. It feels very personal, but I imagine part of his reason is, as I'm walking back to the room, he walks behind me...I've often wondered if it's because he's assessing my gait.

My physiatrists are the best...no matter what time of the day, a nurse picks up and even if my physiatrist isn't at the office that day, they'll have me in to see one of her colleagues.

As to the ER, I never go to the ER until I have been told to go to the ER by a doc (might be GP, neuro, or the physiatrist if they suspect a pump issue.) I've found that when you tell them your doctor said to come (and oftentimes the doctor has called ahead) you go to the head of the triage. Not much the ER can do for an MS patient...most of my trips have been for complications with my pump and they send you to the ER to make sure nothing's amiss.

A few times I've been whisked off in an ambulance, wasn't given an option, because I was just too sick...but those times were for extreme complications from the MS. Ambulance is the least hassle, no check in or waiting...but I don't want to be that sick to warrant a ride.

I will say that new patients wait a long time for appts. with a "super" specialist. At the MS clinic the wait was 6 months to see the MS neuro if you were a new patient.

[J-Bo]

[QUOTE=angel22_99;1451190]Don't worry, we here in the US will be right there with you soon, we just "fixed" healthcare, LOL (no one throw things at me please)
[QUOTE]

Not throwing things at you, just want to understand why you say that. Is healthcare worse now?

[22cyclist]

I can call my neurologist's nurse, she calls me back that same day, and we discuss my problem that I left on the machine earlier. She will then tell my physician and then call me back with her thoughts after that, or the neurologist will call me back herself.

Our care has not changed to a single payer system like Canada's. We are just all being made to buy insurance so that everyone is responsible for their own medical care. It is called the Affordable Care Act. People fight about it like the government was taking their children, but its a good thing overall since those of us who pay for insurance will not longer have to pay for the free riders who just use the ER as a medical service.

Depending on what insurance they buy, some physicians may or may not take it, so one has to be careful when choosing a plan to make sure their physician is in network.

Back to the first question, calling nurses is completely normal, call back times are usually around 24-48 hours.

I hope your neurologist gets back to you in this amount of time.

Take care
Lisa

[mjan]

[QUOTE=J-Bo;1451218][QUOTE=angel22_99;1451190]Don't worry, we here in the US will be right there with you soon, we just "fixed" healthcare, LOL (no one throw things at me please)

Not throwing things at you, just want to understand why you say that. Is healthcare worse now?

Its not healthcare per se, but COVERAGE that has improved! (for most). It is only a start with more improvements coming over the years.

It is much needed for those who were denied coverage due to pre-existing condition or those who go into debt over the cost (#1 reason for bankruptcy) or are cut off once a disease is established.

One day I hope we also offer "medicare for all"..MY point of view..sigh

Jan