when do you call your neuro for symptoms?

[rsb]

Hi everyone! Quick background on me: I have systemic lupus and either CNS lupus symptoms *or* early MS. I have 3 small lesions on MRI, significant right-sided weakness, paresthesias, foot drop, balance problems (I fall a lot), very significant cognitive problems that are better when I'm on steroids, occasional bladder/bowel incontinence, and possible seizures. First neuro was lazy and said, 'huh, I don't know what's wrong. You're a puzzle.' Went to an MS specialist who said possible MS, she is sending me for neuropsych testing, which will help differentiate between lupus and MS, and has referred me to an epileptologist. She and my rheumatologist have agreed to put me on DMD's for lupus that are also useful for MS, so I just started methotrexate last week and will be adding Rituxan in a few weeks.

(OK....perhaps that wasn't brief, lol.)

So here's my question. How often should I be calling my neuro to report new symptoms? So far, I have contacted her when I had a very frightening seizure-like episode, which prompted her to move up my EEG appointment and my follow-up appointment with her, by a few weeks. I also called when I was getting muscle spasms waking me throughout the night, and again when the spasms started giving me problems driving.

I've had other things crop up that I haven't called in to report- things that last 2-3 days and then subside. Two fingers in my right hand felt ice cold (but were not cold to the touch) for 3 days; all the toes in my right foot went completely numb 2 days ago and still are; I have nystagmus in my right eye when I try to focus on text, that's been around for a week but it's not constant.

My litmus test for calling about stuff has been whether it's significantly affecting my daily activities. Other stuff, I'm trying to just log, as my short-term memory has gotten extremely poor. My rationale is that I won't end up on any of the MS-specific DMD's anyway, because my lupus-specific symptoms are more severe and have to be treated with DMARD's.

Obviously I'll go over this with my neuro at my next appointment (in 2 weeks), but I was curious to see how others handle symptom tracking/reporting.

Thanks!

Rachel, 39 with celiac disease, lupus and possible MS

[BeneathTheLies]

I generally call my neuro if the symptom has lasted more than 2 days and I can no longer tolerate it or it's effecting my daily life (work). I notate my symptoms when they crop up, if they get worse or better, and any pain or discomfort they may cause. Some symptoms I don't understand so I just explain it the best I can in my journal. I know my neuro (and the 2nd opinion neuro) appreciated having that print out so they can better understand what I'm dealing with. I have very poor short-term memory also, so I try to document everything as it happens otherwise I'll forget.

You seem to have alot on your plate, I hope things get better for you. Either way this is an excellent site for support. Good luck.

[rsb]

beneaththelies, thanks for sharing. It's a tough transition to go from someone who remembers every little detail to someone who forgets the vast majority of things. I'm having to train myself to write things down, which is (ironically) hard to remember. I have a 4 year old with special needs, and I used to be able to rattle off his entire medical history, lab results, MRI findings, meds and dosages, the whole nine yards- without notes. Now I can't even remember which meds I take without consulting a list.

Right now, I'm putting things in Seizure Tracker online, mostly because I started using it for my son, and I'm familiar with the tool, so I started my own account and list all of my symptoms in their tool as 'other'. I can generate reports with it and track medication changes- it was key in getting my son's epilepsy meds at the right levels, I could print a report of his seizures, other symptoms and meds, then fax to his neurologist. I tried finding a symptom tracker online that isn't specific to seizures, but the only ones I saw (in my short-attention-span search) had no encryption! Yeah, not putting my medical details on an unsecured website.

[cosake]

Hi rsb and welcome -

My neuro has asked me to contact them with any symptom lasting over 24 hours.

They may not treat me for all of the symptoms I report, but they put them into my med file and help determine if the symptom should be treated with meds or PT, etc., or seen by a specialist, etc. in case it is a non-MS symptom.

I always keep track of any symptoms and med changes in a text file and take a copy of it with me when I go to my appointments.

Your neuro will let you know when they want you to contact them.

[BeneathTheLies]

I personally use a microsoft excel file and format it to my specific needs. I also have started use a regular word document. I just date it and write what I need to. I don't trust the internet with holding my personal info so my medical records I've created are all housed on a memory stick. I have everything from scanned copies of labs and reports to pictures of injection site reactions. The best part is I can move to any computer and add to it without having any issues. No need to remember passwords or anything. I keep the memory stick in a small pouch in my purse. I can even take it to my neuro and he can plug it into his computer if I forget to print it out.

Needless to say, there are many ways to go about it. Some people just get a spiral notebook and jot down notes in that. Whatever works for you and helps you keep track.

Good luck,
Heather

[Keepin_on]

This is one thing I grapple with all the time. I never know if I am being too needy, etc by calling, but at the same time I don't want them going "Why the heck didn't you call?". At the end of the day we have to remember it's their job and they can't help us if we don't tell them if something is happening.

I do the same as others usually, call with new symptoms that bother enough to notice and don't go away within 24-48 hrs.

I have had this grey dot in my right eye for a week...comes and goes...doesn't change when it's there...eyesight is fine. Told my Neuro's nurse who said it could be something (relapse) but to see if anything changes.

I need to start writing things down better, I think I will use an Excel file like BeneathTheLies does Good idea!

[cosake]

I use a software called TreePad for all of my medical stuff. (I also use it for all of my recipes and you can use to store information about collections or anything.)

There is a free Treepad Lite version that you can get.

It lets me set up a "Tree" of folders and subfolders for all different categories of items. I have it installed onto a USB drive so it should work on any computer.

For example, my tree looks something like this:

- MS
- Updated Medical Info
- Medical History
- Old History
- Current Medications
- Old Medications
- Doctor Information
- Copaxone/Shared Solutions
- Upcoming Appointment List
- Web Links
- Organizations / Support
- Treatment Info
- Book List

Then there is a text entry for each part of my tree. For the Med list I put what the med is, when I started taking it, who prescribed it, what it's for, and the dose and how often I take it.

Under the Medical History section I show the date, which disorder the entry is for, whether it's a symptom, appointment, test, test results, etc., and where it's located, how severe it is, and how long it lasts and if I did anything to treat it. I do this in reverse chronological order so that the most recent entries are at the very top. Then, after a few months, I move the older entries to the "Old History" section so that I will always have them on file, but so that the recent stuff doesn't get cluttered.

For the Doctor List I have all of my doctors and their names, professions, phone numbers and addresses.

For the Weblinks I have lists of URLs for specific things about MS.

If it's OK to post a link here, the site is: http://www.treepad.com/treepadfreeware/

It isn't available in the free version, but in other versions you can also insert picture images and password protection.