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 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 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.

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.

Cherie