Thursday, January 31, 2008

How Do I Know?

So how do I know if I was to have a relapse? I mean if it wasn't an obvious one like an optic neuritis. To what degree is a symptom considered a relapse? Would a little more numbness be a relapse or just the same lesion acting up? Or slightly more stiffness in the same area of stiffness? What other type relapses are out there? Oh wise and more experienced MSers........Please share, I'm curious. I know we're all different but I'd still like to know if anyone has had the same type relapse that they have had before or has each one been something different? Sorry, had to put Spot, aka Mr. Cute up because I thought the face went well with the questions and his face is much cuter than mine. :)



Never the same, always changing here...sometimes same symptoms in different combinations. I call it a "relapse" if it annoys the sh!+ out of me beyond my tolerance point or interfers drastically with my daily functioning. Sort of like when drinking becomes alcoholic...and I try never to have a relapse before NOON, either! LOL

Linda D. in Seattle

Callie said...

LOL, Linda, Do you always go into the Doc for it or just let it go unless it becomes unbareable. I would assume only another MRI if I were to have a"flare up".

Sharon said...

If it is something small I don't call the doc but like Linda said it is what you can't tolerate. Your going to get to know your own body very well with how it feels so you will be able to determine what feels real bad or not. In the beginning I went to the doc with the flare ups just because I wasn't sure and it is good for him to know. Happy snow day Callie.You can't tell the roads from the droveways are anything this morning.

Callie said...

Thanks, Sharon......Yeah, we woke up to 6 new inches of snow this morning.......

Anonymous said...

I'm just going to echo the previous posters. I would let whatever is ailing you go for a bit to make sure it isn't anything else brewing.

When IT becomes my whole focus and starts impinging on my REAL life, then I usually call doc and get put on a short dose of prednisone -- 40mg for 4 days, then 30 for 3 days, then 20 for 2 days, then 10mg for last day. By then IT is either gone or gone into hiding for awhile.

Keep in mind that the weather plays havoc with most of us MSers. Snow??? Ah, keep it. It is 30 degrees here in Pennsylvania and no snow. Going up to 50 plus for the next week.

Hope you feel better soon,


Callie, I don't know if this is an option in your area, but one thing which was so VERY important the first year after my diagnosis was a monthly ‘newly-diagnosed’ group meeting led by the MS nurse and Neurologist at the clinic where I attend. At the time, he was not my doctor but is now. (The doctor who dx me was a seizure specialist at the same clinic.)

The meetings were scheduled to address specific topics each time, but certainly patients asked questions related to what was going on right then for them. Out of our group, I was the only one who truly experienced a 'fullblown, 5-day IV steriod required' second relapse within the first 6 months. It was helpful to see what symptoms (and their severity) others were experiencing and to be able to ask the MS professionals on the spot those questions.

Regarding a bonifide v. quasi exacerbation, the rule of thumb for a new or returning symptom is one which persists for more than 24 hours. If you become overheated (ie. while exercising) and your vision blurs, that is not a relapse and does not cause further damage. If vision changes and persists for more than 24 hours, it is possibly a relapse and one should call the dr’s office as treatment for optic neuritis is often IV solumedrol.

If you have a UTI infection and symptoms seem to be re-emerging, it's a quasi-excerbation. Treat the infection.

The creepy-crawly-buzzy-tingly-bubblelike-zapping-shooting-itchy sensations are MS symptoms which often respond to medication and are not indicative of a relapse. The ‘it feels like I have 30-lb concrete blocks tied to my legs when I’m walking’ is a symptom not a relapse.

Here’s a question I asked during that first year…

Me: Sometimes when I’m walking and am just about to step, but haven’t yet touched the ground, I get a shooting pain go up my leg that stops me in my track. Doesn’t happen ALL the time but sometimes. Could I have a pinched nerve or sciatic problem or could this be MS-related?
MS Nurse: (After giving the usual ‘not everything is MS’ clause) Yes, that sounds likely to be the MS. Think of it as a little MS reminder just in case you forgot.

As it turns out, the shooting pain in my leg/ankle is most likely due to lesions in my neck at C4-C6.

If you have continuing and life-disrupting doubts as to possible disease activity (ie. relapse or worsening), call your neurologist's office. It is wise to have relapses documented in your records so that the progression of your disease can be more easily determined.

Finally, I'll agree with the previous comments you have received. Wise words.

Hope you feel better soon.

Callie said...

Thanks Anne and Lisa, Very insightful. Helps alot.....I don't think I'm currently experiencing a relapse, just noticing a little occasional numbmess, left arm, but has retreated since I wrote the post. I know I have a C1 lesion and one a little further down, so I'm guessing just the normal MS BS. Thanks again all, your advice and experience is very helpful!

mdmhvonpa said...

Seems to be going around.

Diane J Standiford said...

I left a long (I tend to go off) comment the other day, but computer crashed,ie, I hit the delete key most likely.) I was DX 1990, first years were bad, always something (and I was working 40+hrs/wk)so after going legally blind, I took 3dy/IV Solumedrol at first sign of slightest new issue. This worked for me for a decade. Had bone scans, no problems.(my genes I think) The nurses came to my home, 20min, left IV in, very simple. Took it about every 3-4 months for years until exacerbations stopped(normally after 10-15yrs post DX; I don't have faith in any of the CRAB drugs, though I take Copaxone on/off. You will learn from your body what works for you. It gets better with time.