Elle,

I agree with Snoopy that since you aren't diagnosed, you need to check in with your doctor if you're having new symptoms. They need to be documented and having a typical neurological exam done while you are experiencing them is a good idea.

I have PPMS. My symptoms have a tendency to escalate and then plateau and will remain steady for anywhere from a few days to a year or more. Mind you, my symptoms never recede. They just get worse. When the cycle starts again with symptoms worsening, I weigh the urgency and will determine whether I need to see the neurologist right away. Generally, I have a regular appointment twice a year.
To add to this mix, I have a peripheral neuropathy and sometimes it is hard to figure out which symptoms are caused by the neuropathy and which ones are MS related.
I saw him ten days ago and he felt it was time for blood work and a MRI.
I think, with time, I have learned how to determine when I need the doctor immediately and when I can wait till my regularly scheduled appointment.

I think it depends on your doctor. Mine does not want to know about new symptoms, she just says there nothing she can do about them, so if they are bad I go to the ER. When my right side went completely numb, I called my neuro's nurse, and she called back and said if I could not walk, to come in. So now I save up symptoms for scheduled visits and never call in. when I first got sick, I'd get a new symptoms ever week, and it was hard, but I adjusted to it. I figured they were only symptoms and not necessarily indicative of anything more serious. I learned not to take my disease too seriously, and that has paid off in the long run through less anxiety and less worry, and I am able to enjoy life more that way

Yup. What Cherie said.

~ Faith

That sounds odd - my neuro only wants to hear the new symptoms, not the old ones. I guess so he can check progression. I store them up and tell him about the new ones every time I have an appointment. But typically I don't bother calling the neurologist every time I have a new symptom - or I'd be calling them up every day!

PPMS, no noted other health problems I am unaware of. If I am unsure what could be the cause of a problem, I dial in. I do look on-line first, just to prevent silly answers.

I notify my neuro if i have new or worsening symtoms for >than 24 hours but if they are not affecting my day to day abilitu to function i just diary them and tell him at next appointment but if i am having problems functioning i notify him at the time so we can consider steroids to try and reduce the symtoms again. Having said that even if the symtoms were not causing too much of a problem, if it was happening frequently i would still give him a ring.

this is a very good question.
I was wondering the same thing.

Elle - I am also undx'd. My neuro does want to hear about and treat/test when I have new or worse symptoms. I have left neuros who dismissed my problems, and always advise others to do the same.

My problem is, it always takes 3 months to get in to see my neuro. So, I will call him, and his nurse will call me back and ask questions, talk to the doc, and the 2 of them decide what to do with me.



I also have a great PCP I can turn to in the meantime if I need to.

My SOP (standard operating procedure) has been:


Let the doc know if I want meds for this or not (he always tries to write a script whether I want one or not lol) or if I am asking if it's time for some other test to figure out why I'm having the symptom, or if I just want it noted in my file.

I always want help with the pain. Always want help with the fatigue. Don't want it for sensory stuff. Tingling is not interfering with my life enough that it's worth the side effects of a med for me, you know?

But you decide what you need to get through your day. Hope that helped some.

my neuro says

any ONE new/worsening sx that last continually for at least 24 hours. No breaks in sx.

I should call within 48 hours of knowing that it lasted 24 hours.

then we have ONE WEEK to decide IF we want to treat with steroids. After one week, the recovery rate is shown to be the same as leaving it untreated, and would be not worth the side effects and stress on the body that steroids have.

I would be upset if my MD said they DONT want to know about it. I would find a new MD.