A question about relapses

[4kidsmum]

I'm just learning about MS while awaiting my MRIs and Neuro Dr appt. I have a question about relapses. How do you know if you are having one if you always have balance issues, vision problems, cognition problems, chronic pain and other symptoms. It seems to me like I've always got something flaring up.

I go to run an errand say to the grocery store, literally drive half a mile away, walk in to grab one or two items, drive half a mile back home and my arms and legs are so weak I have to sit on my entryway stairs until I can stand. I drift in and out of conversations or completely lose track of my thought mid sentence. I'm always unsteady on my feet but sometimes I'll have a week or two period where I fall down every day.

Right now my vision alternates between very gray blurry vision and double vision. The vision problems started in April but I finally became scared enough to go to the doctor last week. So, I guess I just need to know what constitutes a relapse. Is it when your normal symptoms are worse than usual or is it entirely new symptoms?

Reading info on the symptoms let's me know I'm finally on the right track with the tests and correct doctors but I'm unclear on the relapse thing since I seem to always have issues. I'm not sure if I'm making sense but if anyone could help me understand that would be wonderful!

Thank you!


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Nicoly3467]

Hi Mum,

Regarding a relapse, my Neuro doc said it can be new symptoms that last for a consistent 24 hours or more or old, existing symptoms that worsen a lot over a course of days or weeks.

What I discovered for myself each time during a relapse is that it can be different symptoms, not always the same. This can vary from person to person though.

I have a lot of leg spasticity (pain/tightness) normally, but this always gets much worse during a relapse, which causes problems with walking. The other symptoms have been slightly different each time.

Hope this helps for you and take care!

[Kimba22]

Hi 4kidsmum,

You make perfect sense. . Welcome to MS World, but sorry for all you are going through. I'm glad you finally went to the doctor. I hope he/ she will be able to give you a diagnosis, soon. Nicoly has explained what constitutes a relapse perfectly. I just wanted to add this info:

From the National MS Society:

An exacerbation of MS (also known as a relapse, attack or flare-up) causes new symptoms or the worsening of old symptoms. It can be very mild, or severe enough to interfere with a person’s ability to function at home and at work. No two exacerbations are alike, and symptoms vary from person to person and from one exacerbation to another. For example, the exacerbation might be an episode of optic neuritis (caused by inflammation of the optic nerve that impairs vision), or problems with balance or severe fatigue. Some relapses produce only one symptom (related to inflammation in a single area of the central nervous system) while other relapses causes two or symptoms at the same time (related to inflammation in more than one area of the central nervous system).

To be a true exacerbation, the attack must last at least 24 hours and be separated from the previous attack by at least 30 days. Most exacerbations last from a few days to several weeks or even months.

You can also read more here: http://www.nationalmssociety.org/Tre...aging-Relapses

After the start of a relapse, many neurologists will only treat it with steroids within a certain amount of time. That's because steroids are used to calm active inflammation in the central nervous system. Beyond a certain point, they won't help much shortening the length of a relapse because there is no longer any active inflammation. But that is all something your doctor will need to determine.

Your description of weakness sounds like something known as muscle fatigue, not a relapse. That's because once you rest, you can stand again. Physical therapy can help with endurance and strength. They will also evaluate your balance and offer suggestions that can help. Falling down should never be an option.

Things you describe do sound like MS, but that is up to your doctor to determine.

There is also something known as cognitive rehabilitation that might also be beneficial for you. http://www.nationalmssociety.org/Sym...nitive-Changes

You can also read about vision changes in MS here.
http://www.nationalmssociety.org/Sym...ision-Problems

I hope this is all just one long relapse that will finally all resolve itself soon!

Best of luck to you and keep us posted.

[BigA]

My theory is that if you're not sure you've had a relapse, you probably didn't have one. I don't put too much stock in the 24 hour rule - it's not as if your body knows 24 hours. Sometimes I feel bad for a week. Sometimes I have a symptom that's extra bad for a week or a month. I don't call these relapses.

I know that within my body at the moment, there is a range of abilities and feelings. Depending on how tired I am, the weather, allergens and whatever, I will feel some combination and level of all my symptoms.

Several times I was sure I had a relapse, but felt better again. Several times I had an MRI directly after - but there was nothing new, no enhancement.

So it's an unknown, though you should always discuss with your doctor. BTW, not every relapse needs to be treated, especially if small. There are long-term complications possible from overuse of steroids.

[4kidsmum]

Thank you both very much! That does help explain things much better for me to understand. I'm so used to dismissing any symptoms as being clumsy, forgetful or out of shape. I know now that my symptoms are serious and not at all normal for a healthy 39 year old woman. It is definitely going to take time for me to learn to listen to my body and learn to distinguish between chronic symptoms and relapses. Again, thank you both you definitely helped clear up my confusion!

[daraslyte]

thats a good question that you asked. i have been wanting to know that also but my nuero said that some symptoms dont ever go away but they may get less noticable if that makes sense . Example with me i have alot of parestesia in bo dy and feet ,my nuero said that wont ever go away but he can treat the symptoms.I do notice that when i forget my med for that symptom its like i have a rebound affect because of it.

So yes i do also have other symptoms that stay with me like cognitive issues, but when i flare up symptoms get temporarily worse and then when the flare up goes down my symptoms get better but dont go away if that makes sense .Im sorry for rambling on but one of my symptoms are not getting the right words out and i always feel like im not saying whats on ,my mind right and i cant explain it enough for me to understand my own words . so i have issues with repeating myself also. so forgive me.

I always have mentality changes but i notice with every relapse not all old symptoms flare up or get worse its hit and miss n what symptoms flare up during a relapse but when i get over heated alot of my symptoms show their ugly face and it makes me real fatigued. so i hope i at least gave some insight i know i am not the best one to explain but i try.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[daraslyte]

Yet another relapse

ok all its been a while for me, but i am in the middle of a relapse . This time it started out like i was having migraines in the back of my head, then it stopped there and went to the front and stayed on my left side around my eye ad into my eye hurts, this a new symptoms.


Of course my other symptoms like cognition, drunken feeling , head tremors, tounge numbnees, speech issues like stuttering, etc... had to come along for the ride also. Very fatigued to no end . The pain has gotten intense around my eye and into it , wow and also iam getting a burning feeling down into my cheek bone also.


so long srory short i called my nuero and he called me back himself 2 times on my cell and he said to get to the er soon and get an infection ruled out and i did and he said to get 3 days of iv steroids so im in the middle of that right now.


Hopefully you all are doing well , stay safe and well all.