At what point do you call your doc about new symptoms?
 

All new symptoms while experiencing a flare up? Any new symptoms lasting > X amount of time? Any symptoms that are impairing your life? Because you're just getting worse?

Ugh... So I am still undx'd, but we seem to share a number of the same symptoms, and you guys are really nice, so I thought I would ask here. For the last 5wks, I have had progressively worsening symptoms. But none are so bad that I feel seriously limited- ie; I haven't had to call into work yet :rolleyes: Last time I dealt wirh a similar episode, I reported all new symptoms to my neuro, panicking every time something new happened- and came away feeling like an idiot when he constantly dismissed me.

So at what point do you call your doc to report in? When is it time to start asking about meds? TIA!!

The golden rule, as I recall, is "new, or worsening of existing symptoms, which last for more than 24 - 48 hours" is an indicator of an "attack".

For me, most symptoms will come and go (by removing the trigger) if they are related to heat, stress, fatigue, etc. However, when I have an infection (often a UTI) this can lead to longer term flare-ups, which may or may not develop into a full blown attack.

Generally the first thing I do is to keep track of my body temp (I am vigilant about keeping it in check!), and get tested for a UTI if I have new or worsening symptoms beyond 48 hrs. If those two are ruled out, then it pretty much indicates an attack is underway for me.

That's my personal experience.

Cherie

Hi Cherie- Thanks for responding. Do you report every attack to your doc? I went and saw a new GP 2 weeks ago, because I am certain that I am having a relapsing of symptoms, and wanted to get into a neuro's office BEFORE it became totally debilitating. But this slow progression is just weird. I feel like everything gets a whole lot worse for 12-24 hours, then gets a little better, which means I am still worse than I was a day before, but better than yesterday... I guess kind of a two steps back, one step forward. I am definitely doing worse than I was when I saw my GP 2 weeks ago- but it's not really anything new, just more disabling. Did that make any sense?

I just don't want to call, go in, and then feel stupid for wasting everyone's time because it's not THAT bad... <sigh> This sucks.

Elle,

If your not dx'd and your doing worse then by seeing your doctor it gets documented and he/she can note any changes and/or deficits that you did not have on your last visit.

Your not wasting anyones time and if your doctor or his/her staff makes you feel that way then it's time to find a new doctor.

Love your name BTW . . .

From your description, it is continuing to worsen. That's an attack, in my mind.

I generally don't report attacks when they happen, but that is because to date I have opted out of most of our drug options anyway. I just keep a diary, and we review the "highlights" when I go to the doc/neuro the next time (annual check-up or for other reasons).

There have been a few occasions though, where I had to be put off work, or where the pain has been unbearable. If the symptoms warrant medication, then it is worthwhile to make an appt.

I agree with Snoopy's approach, especially since you are not yet dx. They often don't like to talk on the phone, but an appointment might be a good idea at this point.

Cherie

I agree with Snoopy, too. If you're getting worse, you need help.

Thanks Snoopy, Cherie, Moonwolf! I appreciate the support and the advice. I think I will call him today and at least set up an appointment. I opted out of drugs for tremor/stiffness 2 weeks ago, cause things weren't so bad :rolleyes: I guess I was hopeful that I could just skip that. Well, and since I still have a nursing baby, less drugs is better.

Thank you all again for taking the time to respond. I am so glad this community is here.

Cherie, how do you know when you get a UTI? I've had one and only found out in the ER ward but this is something I'd like to keep a closer watch on also.

When to call the doc
 

I would 'fax' different symptoms I was having so they could be documented by my Neuro. Sometimes her office would call and have me come in.

I felt 'silly for complaining' but at one point she put me on a steroid drip and it really helped. So my complaining was validated by 'yes there is something wrong here'.

Also....those damn UTI's. I got myself a home test kit. I always thought you would know if you had one....but not always. I went for a long time with one and did not know it. No wonder I felt MSy. Now I take cranberry supplements to try and give my system some help.

Hi Petpuppy, so nice to see you again!

Sometimes I have symptoms, but unfortunately other times I don't have any indication until the fever hits. By then, it would normally be "too late" and I may already be headed into an attack.

I have learned how to empty my bladder completely now (by leaning ... for me the LDN helps too), so it isn't as big of a problem any more. But UTI's can be a BIG problem for many of us.

Off of the top of my head, I recall experiencing burning, pain, hesitantcy, a low grade fever . . . or at times it was ONLY a sudden "flare-up" of MS symptoms. The first thing I do, whenever I have new symptoms (even for just a few hours), is to keep an eye on my body temp. If it is a UTI, I would often have a low grade fever, up to 100 degrees maybe, but this was often a sign of a UTI for me. I treat a fever consistently.

From my personal experience, and since I have gone into full-blown attacks from disregarding the warning signs of a UTI, this is the first thing I am checked for when new symptoms come on (which are not explainable by other triggers; heat, fatigue, stress). There have been a few times where I've probably wasted my doctor's time by being testing (lab tests are the most accurate), but I'm am very sure that this regime has helped me to avoid some attacks too.

That's my story, and I'm sticking to it. :D

Cherie

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. :confused:
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.

:o

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.

This is probably a question that many people have, but I just wanted to point out that Elle posted her question in Oct/06 so she probably isn't reading the answers any more. :)

Some people are hoping to hasten the attack by getting on steroids, and others avoid them like the plague. Whether we take them or not is very much a personal decision (not the doctor's), so I don't see there is a NEED, necessarily, to see a doc during an attack.

The longer one has had the disease, the less likely we are to be too terribly concerned with each change. If there is no desire for additional medications (or required testing), why waste both of our time? :confused:

Cherie

if you are still undx'd then I would definetly call the neuro and get in - this could actually speed up your dx.

Just my opinion and your question was great because I think we all have it. The only thing is if you are dx'd the only thing they can do is steriods to try to help. Otherwise I just document it for the next visit.