Don't know how to handle neuro

[jasstorm]

Hi all,

I have been in a flare up since before Xmas
MRI showed new lesion on spine. Did oral
dose of prednisone but did not help. Told
neuro I want to start tacifidera flare up is
Getting worse and have been waiting almost
2 weeks for her to get back to me to start ivsm
Not sure how to handle situation. Thoughts??

Thanks
Jasstorm
1st ON 2001. Dx'd 2006

[DebbieB]

Hi Jasstorm, So sorry you are going through this. I think you need to contact their office again - perhaps your message got lost..? Ask for a Nurse/Physician's Assistant if you can. You need to be persistent.

Good luck!

[Thinkimjob]

Go to the ER, if it's bad enough, and they'll probably start the IVSM.
Also, no good waiting for your neuro to call. Call her, and keep calling.

[jasstorm]

I have called 4 times in last 2 weeks spoke
with her secretary 2 times. If I don't hear
from her by tues will prob go to er. So frustrated
and feel horrible. Thanks for listening

[pennstater]

hi jasstorm,

is you neuro familiar with treating MS? I would start looking for a new neuro, one with back up if they are not available. That is one question to ask the neuro - what is expected call back time for medical emergencies and questions. Mine always calls back same day if emergency and within 48 hours if general question.

I do hope you feel better soon. Let us know how you make out.

[KatieAgain]

You need to be your own advocate sometimes. You have already called four times in two weeks and have not gotten anywhere.

I would call this morning and state very calmly that if you don't hear back by Noon today, you are going to the ER for treatment. Don't wait until tomorrow. If you don't hear from her, go to the ER to get IV steroids and ask them for a referral to a new neuro with MS expertise.

I hope you are feeling right as rain soon...flares are miserable.

[jasstorm]

Thanks for the support. I am going to call in am and tell them I am going to er if I don't hear back. I am feeling worse everyday. Def going to find a new neuro. Will keep u posted. Thanks for listening

[DebbieB]

This is ridiculous, Jasstorm! I'm so sorry you are going through this...as you can hear from the other posters, there may be a delay in the Neuro getting back to you, but NOTHING like you are experiencing. It's outrageous!

So sorry....hope it turns around soon (both your health and getting a new Neuro!).

[justacowgirl]

I would also be looking for a neuro yesterday. I had a similar experience and thankfully my new doc takes great care of me.

I always get a callback within a very few hours and someone is on call 24-7.

[NYJenn]

That is not right. A neuro should return your call.

Personally, I would have lost my cool by now, and would have yelled at the secretary. Which also is not right. Take care of yourself.

[Mamabug]

I had a neuro for about 5 years that was awesome at returning phone calls. He did not have a nurse, but had an assistant that was in charge of the office and other things. Although she answered the phone when I called, rather than calling me back with an answer to my questions or concerns, the neuro always called me back, personally. And, usually within the hour.

I switched doctors about 5 years ago, due to my MS being fairly a-typical and somewhat out of control. I now go to an MS specialist. Initially, I had trouble with the nurse not returning calls, but, I discovered an email address for her, and she must be more of an email-person than a phone-person. She reads my messages, checks with the doctor, and emails me back quickly.

That might be one suggestion, to check with their office to request if email communication is an option that would work better, more quickly and more efficiently.

In the meantime, perhaps you could go through your primary care physician (your regular doctor)'s nurse and see if their office could advocate a response for you from your neuro's office?

~ Faith

[jasstorm]

Thanks for all the responses. I finally heard back from neuro today. I will be starting ivsm in next day or two. Still considering looking for new neuro. Asking about email communication is a great idea I will ask about that. Thanks for listening

[DebbieB]

Thank goodness the Neuro FINALLY responded. Good luck to you - hope you feel better soon!

[mjan]

Well GOOD, finally! BUT do not be afraid to ask him face to face, why he never responded when you were so sick?
Put him on the spot. See how he handles it and if he even owns this error. Because of he doesn't, he needs to be replaced for sure!

Always ask at your appts or when discharged from a hospital, how do I reach you, what is your triage policy? Often it is a nurse who take the info from the patient, speaks to the doctor and they decide what and how to inform you what to do. Geezlouize..

Better times next time! Let us know how you are doing ok?

Warmly, Jan