Silly Question

[greaterexp]

With our roller coaster symptoms, is it possible to not recognize a relapse if the symptoms are not particularly intense or debilitating? The general definition of a relapse is that the symptoms last at least 24 hours with new or worsening of symptoms.

[Allen5280]

greaterexp , I am right there with ya on that question. According to my Neurologist/ Specialist I am to be looking out for symptoms that are more persistent for a 24hour period or more. Like the feeling in my feet are always pins and needles type burning but if it's different like numbness instead of the usual weird feeling, or unable to move it or something more abnormal than usual. I am always trying to keep track of my symptoms looking for that little boogeyman peeking out from under my bed.after I was first diagnosed I was always calling over every little thing and that 1st year I think I had 4 or maybe 5 MRI'S. I still talk to my specialists office often espically if I have a persistent issue going on that's a little outside the box. My last relapse was kind of evident cause it's hard to not notice vision loss. However, at times when my exacerbations are running wild 👹. It's always something at the back of my mind going... what's going on now... here we go again... arrrggggggg I don't th8nk it something that will ever be outta my head ever again.

[erash]

greaterexp great question. I've wondered the same.

If my left foot vibrates but it was always my right, is that new? A relapse? Or just a new way for an old symptoms to present?

[Taylorsmom in reply to erash]

greaterexp If the left foot vibrating is a sign of a relapse, then what? I imagine the vibration is bearable so you don't feel the need to admit yourself into the hospital or anything. So if a true relapse is bearable, what to do? If your left foot began to vibrate, what would you do?

[erash in reply to Taylorsmom]

Taylorsmom

Exactly!

[kdali in reply to erash]

You're suppose to call if it's new/old but crazy and has been going on over 24hrs to let the MD decide if it's a relapse, etc. The level of tolerance doesn't correlate to lesion presence or volume.

[erash in reply to kdali]

kdali i have a great neuro team (ms specialty clinic) that I can email when I have questions/concerns but they don't react much except to ask if I want IV steroids (my MRIs are unchanged X diagnosis). Frankly, I don't want steroids each time I experience a new minor symptom--esp. When they are usually transient.

I'm also on no DMTs.

Perhaps this approach isn't so wise?

On the other hand, my team has been very responsive when I felt like I was in a crisis re. my work or disability situations.

I think we are each at different places in our disease. Certainly a more aggressive approach to a younger person, esp. One who might be pregnant, is wise.

I like what someone said, we are like snow flakes with this disease 😊

[kdali in reply to erash]

I'm glad you have a good team you are happy with!

I don't want steroids for every little thing either, but I feel like my MD wouldn't order it unless she really thought it was needed for me. That's it though, being pregnant and having little history, there's no drug to change to and no MRI to evaluate anything...and we don't know if my DMT is even working yet. *sigh* Luckily nothing new/old and crazy has persisted so far. 🎉

Everyone is different, and in their own MS journey will change many times along the way. It's important to have a team you trust and some guidelines for when to report issues, even if you don't want to be treated right then. I don't feel like everyone has those two things, but I am very glad to hear that you do!

[Jesmcd2 CommunityAmbassador]

Really great question greaterexp I often wonder about the cognition fog and it I should be worried, but eh! I don't post my marbles playing with WAshingtongirl along time ago.😄

According to the MSAA web site this is what I found.

"During a relapse, inflammation is occurring along the nerves and the myelin, causing patients to have a temporary worsening or recurrence of existing symptoms and/or the appearance of new symptoms. This can range from a few days in duration to a few months, followed by a complete or partial recovery (remission). Acute physical symptoms and neurological signs must be present for at least 24 to 48 hours, without any signs of infection or fever, before the treating physician may consider this type of flare-up to be a true relapse.

A pseudoexacerbation is a temporary worsening of symptoms without actual myelin inflammation or damage, brought on by other influences. Examples include other illnesses or infection, exercise, a warm environment, depression, exhaustion, and stress. When symptoms flare, checking for a fever is important, since even a minor infection and slight increase in temperature can cause symptoms to appear."

read more here...... mymsaa.org/ms-information/o...

Jes 🌠

[goatgal in reply to Jesmcd2]

jesmcd2 You and greaterex and this discussion thread help untangle this frustrating and often debilitating disease. It's been hot here (112 Friday, 113 Saturday) and I feel as if I am living in a cave because the light makes my eyes hurt. This heat seems to bring on a constant headache even though I stay indoors with the AC. Cool compresses on my brow help, as does ibuprofen, but even brief trips outside (to get the mail, to feed the hens, to move the hose (because if I don't, the hens and plants will die)) makes my eyes wince, intensifies the pain, and leaves me feeling fatigued. But I know from past attempts that to understand, that this is just how I react now to the stress of too much sun, too much heat, too much bright light. The power failed yesterday for a large swathe of a nearby community, and mine failed for about 4 hours a couple of weeks ago, so here's what I am grateful for: during our current extreme heat, my power has been on; my ancient AC system has been faithful. And so we all soldier on...

[Jesmcd2 CommunityAmbassador in reply to goatgal]

I hope you have a lot of freeze pops on hand goatgal ! That's an awful hot!😕 But I do understand that things need to be done.😊

I think it's great that Erin greaterexp brought up the subject.!.😊 Your more than welcome to ask your on questions also😉

Jes 🌠

[OsborneSR in reply to Jesmcd2]

Good, specific information on how to know if you hare relapsing. I tried keeping a diary about how I felt daily, but then I found I was focusing too strongly on every little thing. I then would get a feeling one day I might be relapsing and stress over that, making it worse. If I did not get out that day, my symptoms felt worse. If I got out and just did everyday things I have a good day.

It was very helpful to hear a symptom should last at lease 24-48 hours before considering a relapse. In 2 weeks I have my 1 year since my first episode. My doctor called the numbness the new norm. I prayed that wasn't the case, but am beginning to accept it and find ways to do most of what I have did before. I never enjoying running anyway!

[Jesmcd2 CommunityAmbassador in reply to OsborneSR]

Hi OsborneSR I don't think we have had the pleasure😊 Welcome to Our MSAA Community! Sorry it's because of this monster tho.😐

We talk a lot about keeping a journal here for symptoms, how long they last and such. Also questions for your Dr's. But I can see how keeping one every day can 'make' you feel worse. 😐 I'm glad you stopped😊 Just Enjoy Each Day As It Comes!💕

Jes 🌠

~Helpful Hint~ If you put an @ in front of the person your addressing, they will be notified. Example: @ jesmcd2 (with no spaces. )🌠

[Taylorsmom in reply to OsborneSR]

Hi OsborneSR and welcome! Story of my life now, focusing on every little thing that is. It gets me to wondering, should I pay attention to this, is this a relapse, should I call my neurologist, and the list goes on. Nowadays, I don't really know what to pay attention to or what to just deal with. Because I don't know, I just keep a list of things in my phone of when things occur and for how long so that I can discuss them during my next appointment.

[greaterexp in reply to Taylorsmom]

Taylorsmom , I do the same - keeping a log on my desktop to print off before appts., but I plan to ask my neurologist for details about when it's appropriate to notify her and when to just keep going and accept the new symptoms as routine.

[Taylorsmom in reply to greaterexp]

greaterexp , that's my plan as well.

[mrsmike]

Hi greater exp,

Not a silly questIon I wonder the same thing myself!

[cheilke]

EXACTLY! PRECISELY! I decided immediately this time it was a relapse (on a Saturday), saw my neurologist Monday, but between MRI's and other tests, still have no answers, much less treatment, 3 weeks later. I see the neurologist Tuesday when I hope to get some help finally. But, I generally hem and haw and can't decide if it's an exacerbation or not.

[Eleyne92]

I have spent SO many years dismissing odd or crazy symptoms, some which I know lasted days or weeks and others that were of shorter duration, that I'm not sure I'd notice anything but the worst relapses. My MRIs have only indicated one episode of new lesions since I was diagnosed, but at that time, I hadn't noticed any symptoms.

I haven't had any episodes that I could definitely say were relapses, but I'm used to putting up with annoyances that come and go, I do wonder. And then there are the annoyances that show up for a day or two, go away, then show up again for a few days again. Often, I don't even notice when they start or quit. Is it heat? Fatigue? Something related to old injuries or other orthopedic problems? (Pregnancies really did a number to my ligaments.)

And then I wonder if I could even get in to see the neuro before the symptoms go away again. 😕

[rlh1974]

Absolutely! Sometimes we count it as a couple bad days. Instead of what it really is. It has happened to me a couple times!

[kdali]

Of course, this is how many of us are not diagnosed for years to begin with 😵

[Taylorsmom in reply to kdali]

Exactly kdali .

[carolelesly]

This disease is SO frustrating! I feel blessed that if/when a relapse occurs that it's nothing worse than the burning pins and needles feeling in my lower legs or the "fatigue" that hits me like a ton of bricks and drops me to my knees (more accurately, to my bed!😁)!

Truth be told, I have other issues (a replaced right shoulder that has left me with limited range of motion, several severe back injuries, including a compression fracture in my lower back, which causes unrelenting pain! 5 years ago my husband was forced to resign from his job & falsely accused of something that ruined his 27 year career. We used all of our savings and retirement money on lawyers who dropped the case as soon as the money ran out. We lost everything, and had to move in with my mother-in-law who is in terrible health. I tried to care for her but she would never follow the doctor's instructions and her health just yo-yoed. After a year and a half I couldn't take it anymore and left to go stay with my daughter....this has happened 3 times now!) When you put all of this together it's difficult to determine if some of the symptoms I experience are true MS symptoms or are they due to the other issues going on in my life?

But we all must carry on and move forward...and it is only by the grace of God I am able to make the journey! ✝😀💟

[greaterexp in reply to carolelesly]

carolelesly , you've certainly had plenty of stress which may affect symptoms. I'm sorry you've been dealing with situations like this on top of MS.

It's very difficult to decide when a relapse is occurring since our symptoms can change suddenly, react to stress, heat, or other factors, and last varying lengths of time. Is it simply progression, a pseudo relapse, or a true relapse?

I don't want to call my doctor unnecessarily or focus on symptoms too much. I seem to have new symptoms that may last only 24-48 hours, though none are truly debilitating, and none as obvious as optic neuritis. So I keep plugging away, but with that tiny question in the back of my mind.

I pray for us all daily and am glad for the grace of God!

[carolelesly in reply to greaterexp]

I think the two most positive things we can do in life (not just those of us with MS, but everyone), is to keep moving forward and PRAY! 😀. Everything that's happened to me and to my family over the past 5 years has brought us closer to God! I wouldn't change that for anything! Our life here on Earth is such a small amount of time compared to eternity! I'm much more focused on that than on the life I have now. Don't get me wrong, I want to have a happy, healthy and long life! That's because I want to see my grandchildren grow up, enjoy my family and hopefully be a positive influence on others and make a difference (however small), in this world! But the other stuff, the unimportant things such as a big house, a new car, or designer clothes....could care less! God blesses us with joy and peace when we give our hearts to Him! No amount of money can give you that!

All of that to say, even though my ENTIRE life is stress, I know that better things are waiting for me! I remind myself of that fact when I feel "Mr. Pity-Party or Ms. Whyme" start walking through the front door of my mind! I WILL BE HAPPY AND WHOLE AGAIN....FOREVER!!!😀😀😀

[Taylorsmom]

Hi greaterexp ! That is a question that I struggle with all of the time. Because I have had on and off symptoms years before being diagnosed as well as symptoms since then, I wonder all of the time. My symptoms tend to last for days but it doesn't leave me bedridden or anything even close. I just notice it and I keep moving. I to this day don't know if I've had a relapse at all or am I just suffering MS symptoms. Ya got me...I'm stumped on this one.

[pmbevac]

Yeah, great question. It is difficult to gauge if the symptoms today are worse than last week or last month or last year. Is there anther cause - stress, heat, ?? Is this just old age masquerading as a new symptom?

For me it is going to have to be obvious - if my arm wasn't falling off I have always just ignored any new pains & problems and waited for them to go away, which they always did. New world, new rules.