I Am In The Midst Of A MS Relapse

Yes, right now as I type, I am undergoing a flare-up of my MS. Actually it has been going on for a couple of months at least, but being the pro that I envision myself to be, I thought I'd ride it out hoping it would reverse itself of its own accord. Well, it didn't!

You see we "pros" don't let every little problem get us all worked up. We know there are going to be good days and bad days, symptom-wise. We take it a step further by reminding ourselves there will even be bad weeks strung together that don't necessarily have to send us running to the neurologist for assistance.

For example, my mom passed away a year and a half ago. It was very stressful. I fully prepared myself for a flare-up and when it hit, I rode it out by resting and grieving and taking it easy with myself. It eventually passed and I regained what I temporarily loss.

Seeing my neurologist about a flare-up is always a pleasant experience. He is very nice and patient and caring and we laugh quite often.
Seeing my neurologist about a flare-up is always a pleasant experience. He is very nice and patient and caring and we laugh quite often.

The Definition of an Exacerbation

Now technically speaking, any non-sensory problem that lasts 24 hours or more is a flare-up or an exacerbation, or an attack, or even a relapse. You can pick the noun you prefer, I like flare-up.

So, excluding sensory issues such as numbness, tingling, burning, itching etc. and after determining you are not having a pseudo exacerbation, you may consider yourself in flare-up mode if what you are experiencing lasts longer than a day. (I'll cover pseudo flares in another article.)

Whether that sends you running to see your doctor is a horse of another color. Based on that criteria, I'd be making an appointment almost monthly, as I can easily exhibit symptoms for 24 hours or more on a monthly basis. No thank you. If I truly am experiencing a relapse and it lasts a couple of days or so, I know I can ride it out and not even remember it happened by the time it has eased up for a day or so.

But then again, I am a pro. Pro's learn to deal with a lot without reacting in a panicky sort of way. We've learned to chill-out or "chill-lax" as the late, Bernie Mac would say.

For a MS newbie, unused to the body acting in such unpredictable, unexpected, and unwanted ways, a symptom flare-up is scary and dreaded.

What does it mean? Am I going to totally lose a function? Is this the start of something that is cascading? If I do nothing, will I get sicker?

Not to mention when a newbie has to endure a loss of function in totally unrelated areas of the body, say a weakness in the left arm and a left hand tremor, in addition to weakness in the right leg, which prevents standing for longer than 15 minutes at a stretch.

Putting yourself in the place of someone newly diagnosed with MS, can help you to understand why they may feel shall we say, tense, right? So it is totally understandable that it will send them running to their doctor or neurologist to get the flare-up analyzed.

Quite frankly, I think it is the correct decision, since a newly diagnosed person needs to be tracked to determine with as much certainty as possible, what type of MS they have.

Why I Stopped Chill-Laxing

If, I'm such a "pro", and have mastered the art of chill-laxation, why am I headed to the neurologist in a week? Frankly put, chill-laxing has not obtained the optimum results I had hoped for.

Every now and then, no matter how much I do, it just isn't enough and I must accept the fact that I too must do something I dread. In my case it will probably mean doing another 3-5 day pulse of mega-steroids and going through the wonderful roller coaster ride that is solu-medrol IV treatment.

 I'll have to be up for days at a time, recover from the lack of sleep, yada . . yada . . yad . . but so be it, as my way has not worked. 

 I've managed to keep my MS at bay for about 3 years now, without any steroids. I knew it wouldn't go on forever, especially since I am not currently taking any injectables that slow down the progression of my MS. Statistically speaking, I'm ahead of the came. ( I injected Copaxone for 7 years, read about that experience in this hub.)

My Symptoms

Actually, that was me I described up above. Two opposite sides of the body- left arm, right leg. Two opposite body parts- arm and leg. One body part limiting my ability to function in a normal way for a normal amount of time. Of course, my "normal" bar is set much lower than a healthy person's bar, but even for me, my activity is greatly impaired and not improving.

When you rate the intensity of an attack you determine what you can do, how long you can do it, and whether or not the use or function is slowly getting better or not.

 In my case, I seem to feel better for a day or so and think, "good, its going away" only to find it is back in a day or so and leaving me a little more depleted as time goes on. It has been so gradual for me that I underestimated my flare-up. If it wasn't for an e-mail I received to update my profile on a MS website I joined, I don't know how long it would have taken me to realize this flare has been going on too long.

Usually my bad flare-ups slap me in the face. POW! Its just there demanding my attention. Not so with this flare. It has been insidiously gaining ground on me, creeping along ever so slowly, advancing at an almost indistinguishable pace. Hard to spot when you look for galloping, attention-grabbing, in your face, sort of symptoms.

Thanks to my chart update, I recognized my decline from just a few months back. Asked if I have been able to care for normal duties and functions around the house, the answer is NO. Asked if I could walk unaided for a certain length, the answer again was NO. Hmmm, I thought, this flare-up needs my thoughtful attention, I've chill-laxed long enough.

You Know You're In A Flare When . . .

You know you're in a flare when you call your doctor and you get a quick appointment. Usually neurologists, especially MS centers are booked all the time. You have to wait anywhere from 1 month to 6 months to get a follow-up appointment. That changes when you describe symptoms indicating a flare, then you get pushed to the front of the list and get the next open spot, or cancellation. When I reported my leg weakness and problems standing and walking, I was given a cancelled spot and told not to miss it because the doctor was booked until November. I was told I was probably in a flare since I was having trouble walking and that she wanted to make sure I got in as soon as possible.

She even apologized that she couldn't get me in sooner. That's another clue you are in a serious flare. Caring and knowing professionals understand your symptoms are no little deal, and get you in ASAP.

I'm Not Scared

I guess that's the "pro" in me. I've been more incapacitated than this, in the past. My first experience was terrifying for me. I have a fearof losing the use of my legs and when it first occurred I thought, "Oh no, here it comes!" However, I've seen the lesion heal, and although it is still there, it becomes inactive to the point that it doesn't affect me all the time. As long as it stays that way, I think my leg function will be OK. Of course I can't become overconfident and ignore obvious signals that the lesion is active again. I know it is active again right now, so whether I want to or not, I've got to follow my neurologist's recommendation which will probably be to get the inflammation down, by an IV of solu-medrol.

More on Causes of Flare-Ups

Flare-ups boil down to inflammation of the CNS (Central Nervous System). This swelling or inflammation damages the myelin (the protective covering of the nerves) which slows or disrupts the transmission of nerve impulses and causes symptoms of varying degrees at varying locations.

That is quite a mouthful, but it just means any body part or muscle controlled by nerves can be attacked at any time for any reason. The longer your initial symptoms last, the better the chance the symptom will remain with you for life. Which is why newbies are urged to get on an injectable as soon as possible, to slow down disease progression.

Since every part of the body is controlled by nerve impulses from the brain down the spine to the muscles and nerves controlling the muscles, every part of the body is up for grabs.

That reality is disconcerting, but you know you have gained "pro status" when it doesn't keep you up at night, thinking about all the what ifs.

What's Next For Me

Well like I said, I'm off to my neurologist next week, where I will be given a thorough exam to see what I can and cannot do, and how my reflexes are holding up. He'll take a history of this flare, no doubt tell me I need to be on something. I'll remind him I'm waiting for the pills to be approved by the FDA and let him know that steroids have always helped me. He'll probably agree that I should do a pulse and I will then be set up with my Home Nursing Care institution for the steroids. Of course there is always the off chance he will just give me a whole bunch of steroid pills to take, I wouldn't mind that at all.

Whichever he decides, this time I'll write about it from the time the script is sent out until I have finished the process, that way anyone wondering what it is like will have all the details.

I will be continuing this subject in a new series of articles designed to cover the initial visit with my neurologist, right on through each day of my steroid use. It will therefore be at least a 4-part series.

Please click here for Part One.

More by this Author


Comments 35 comments

Jen's Solitude profile image

Jen's Solitude 4 years ago from Delaware Author

Mara, I am so sorry to read about your friend. She has certainly battled MS for a long time. I hope she fully recovers from the relapse. Seems as though she has developed many abilities to successfully deal with her version of MS. I think that should work in her favor. Of course there are so many questions such as is she getting any better? Even small progress could point to a good recovery in the future. I do hope her time spent in the rehabilitation center allows her to recover so that she can leave and continue to live on her own.

Perhaps a change in the disease modifying drug she is using is in order. Gilenya has been very good to me, but there are so many other choices. If you need any information about the drugs please feel free to email me, I would be happy to answer your questions. I am glad she has a friend like you looking out for her!

Sincerely,

Jen


Mara 4 years ago

Dear Jen,

I have a friend who has had relapsing, remitting MS for 40 years. She woke up the other day and could not bend her legs or walk. Her legs feel like cement dangling from her body.

Marie has gone now from her home to the hospital and is in a nursing / rehabilitation center now. I believe this could be an exacerbation. She is so depressed, as she has to cath every time she urinates and with everything else going on in her lif, this is the last think she needs. Marie is not computer savy. I just thought I'd ask your opinion. Thank you so much. Mara


Rastamermaid profile image

Rastamermaid 4 years ago from Universe

Great hub!

Surprised I just found it. Very informative and so,so true on many levels.

Thanks for sharing!


Jen's Solitude profile image

Jen's Solitude 4 years ago from Delaware Author

Thank you very much Frank!

Kicking MS, please forgive me for not answering your question. My memory problems seem to be increasing the longer I deal with this crazy disease. :-) I talk openly with my family about my MS. They are all very caring and encouraging to me. I have only told my husband and sister about my online content, but I've asked my sister NOT to read it because I think if she knew all the details about my "problems" it would upset her and make her feel to useless. She is there when I need her and that is what matters most to me.


Frank Sheridan 4 years ago

Enjoyed reading and wish all well in the coming year


Kicking MS 5 years ago

I am so glad to stumble upon your writing. I was recently diagnosed with MS. I have not even been married for a year. You give MS a face( even though Blurry LOL). Have you shared this with a lot of family?


Den 5 years ago

im going for iv steroids today. Im terrified i was diagnosed a week ago and can hardly walk. My baby is 9 weeks old and my other is 18 months and im in a mess my life seems to have turned into a nightmare.


Jen's Solitude profile image

Jen's Solitude 5 years ago from Delaware Author

If your doctor has prescribed an IV, then yes it sounds like an exacerbation/relapse to me. Although I am in no way medically qualified to make a determination about your future chances of walking, the optimist in me doubts that you will be unable to walk again. :)

Steroids have worked immediately with me and have taken as much as a week to two weeks after the initial course, to begin working. Everyone is different and as torturous as it is you really do have to wait and see what happens.

As for my personal experience, yes I have found steroids to be very useful. I have worked hard to learn things that can be done in between relapses to prolong the flare-ups as long as possible. I'm hoping to conclude this spring season having successfully avoided a major flare-up for a year.


Nicky 5 years ago

So does it sound like a relapse to you. And is it fair of me to think I will walk again. Am going to look at your articles. Have you founfd steroids useful or do they take time. what are the side effects like


Jen's Solitude profile image

Jen's Solitude 5 years ago from Delaware Author

Hi Nicky, Sorry to meet you under your present circumstances.

I can imagine how worrisome it must be to have such a serious relapse after 10 years without one.

Please rest assured that this relapse does not have to mean the worst. I have had relapsed in which I was not able to walk without difficulty, even standing was a challenge. The IV steroids assisted in lowering the inflammation which allowed my body to slowly heal.

I have written many "hubs" about my experiences so please click on "Jen's Solitude" at the top of this page to be taken to a list of my MS articles. If you have any specific concerns or just need more reassurance please feel free to email me.

Hang in there, let me know how you make out with the steroids.


Nicky O'Brien 5 years ago

I have had MS for around 10 years and have never had a really bad relapse even though my MS has got worse over time. I am having a very acute relapse now where I can't walk or stand. I am terrified I will never walk again. Could you let me know from your experience if you can loose the ability to walk ina relapse and then get it back when the relapse is over. I am getting IV steroids next week. Why do people talk about them like it is really hard to go through


Nicky O'Brien 5 years ago

I have had MS for around 10 years and have never had a really bad relapse even though my MS has got worse over time. I am having a very acute relapse now where I can't walk or stand. I am terrified I will never walk again. Could you let me know from your experience if you can lose the ability to walk ina relapse and then get it back when the relapse is over. I am getting IV steroids next week. Why do people talk about them like it is really hard to go through


Brett 6 years ago

OK I will thanks


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

It is nice to meet you Bretty. So glad you are enjoying complete remissions, if you do in fact have MS. I am sure your neuro will have helpful suggestions for you. Knowledge is power, so I am glad you are not afraid it will go along way to adjusting to MS.

Of course I hope you find out you don't have it. Please let me know when you find out for sure.

Dar


Bretty G 6 years ago

Hi thanks for sharing... I have had double vision and my MRI is suspicious for MS... I have an apt. with the neurologist coming up... I now feel 100%, I actually thought I was out of the woods until I read more about this stuff... For about 4 or 5 days I did feel off and didn't think I would ever get better, I probably got the R-R type, at least Im back to feeling 100%, because with that flare up it was hard for me to do very much... Im not afraid.


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Your welcome James. I hope you are feeling better soon!


James Cottrell 6 years ago

Thankyou. I needed to have this info, as I was trying to identify if I had a relapse. I am ringing the neurologist tomorrow!


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Hi info help, yes I am in remission. This was first posted 3 months ago, I did the steroids and even lived throught that experience. :) Great to read your husband is in remission now too! Thanks for your encouraging comment!

Dar


Info Help profile image

Info Help 7 years ago from Chicago

Hi Jen,

I hope you go into remission soon as I know the symptoms can be very hard to deal with. My husband got diagnosed with relapsing-remitting MS in January 09. He appears to be finally be in remission since about 1 month ago. I pray for you and I hope that you are feeling better very soon! I hope that one day, research will find a cure for this disease.


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Hi Katie, I was just editing this hub and glad I did or I would have missed answering your question. I am better now. I'm walking again, although I wouldn't mind being able to walk for longer periods of time. :D Still I will take what I can get. I just told my husband last night, it feels like the steroids are really helping now that a couple of weeks have passed. Wouldn't you know it, today I'm totally wiped. LOL Fatigue comes and goes though, so just taking it easy and expect to feel better tomorrow.

Thanks for your concern Katie.

~Jen


KatieE39 profile image

KatieE39 7 years ago from Colorado

I know that you wrote this hub a while back...how are you now? Very informative hub. (-:


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

You are so welcome. As long as we are here at hubpages we won't have to suffer loneliness that is for sure. :D I had a period of time I had to sleep sitting up, amazing what you get use to when you have to isn't it? Your sweetie sounds like the 6 million dollar man in heart and in soul LOL

We'll have to exchange e-mail addresses when we get the chance so that we have another way of keeping in touch, OK? Hopefully I will remember to contact you soon. It is getting later in the day though and that is when my MS affects my memory more than usual. But who ever remembers first can e-mail the other.

~Jen


grannyturnip profile image

grannyturnip 7 years ago

Thank you for the encouraging comments on my three hubs. Since I retired and have been so often ill, I have been pretty lonely so it is good to connect to people that understand what it is like. I hope you get to go on your vacation. I love to travel even when I have to bring a wc, scooter, and a recliner to sleep in.. My sweetie drags that all along for me and has often carried my recliner through the lobby of some motel because I can only sleep in a recliner. We even had to buy a recliner when we were in Mexico. Luckily we found a bargain. I could never travel without him. He makes my life possible.


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Hi grannyturnip, it is so nice to meet you! Thank you for replying to this hub. Yes, I am happy to report that I am doing better now that I had the 3- day solumedrol. My husband and I are planning a mini-vacation for July before anything else happens. I am looking forward to it, but it is making me confront my own wheelchair/scooter needs for the first time in 16 years. Brings up a lot of feelings that I am not use to having.

I see you have had to deal with the whole wheelchair issue too. A heart attack, bypass surgery AND MS, surely has your plate overflowing. So sorry to read of your hardships and the fact that you might be progressive. Sometimes relapsing/remitting can come right up to the line of secondary progressive, I hope that proves to be true in your case.

Your endurance over all these years is an inspiration to me. Thank you so much for sharing your experiences with me and I look forward to reading more from you. I'm going to go and check out your profile page as soon as I click the post comment button. :)

Warm Regards,

Jen


grannyturnip profile image

grannyturnip 7 years ago

MS sure is a confusing disease the way it treats us all so differently. I am sorry to hear how it is treating you right now. My neurologist says I have relapsing nd remitting and I am on Avonex because of a reaction to the Copaxone. 'the first attack I had blew out my right foot and created a serious foot drop. I managed with crutches and wheelchair when the distance was farther. I had a heart attack and triple bypass and have been in the chair since. Slowly recovering and can walk a little with my walker. I never have relapses like others describe and seem to slowly get worse with age over the last 20 years so it seems more like progressive to me. I am going for a second opinion soon. I hope you are feeling much better by now and I will read more of your hubs because they are informative and well written.


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Yes I made it through the IV steroids in pretty good shape, this steroid CRASH is killing me though. :(

I'll have to give myself more time to recover. 3 days still isn't enough. This is the pits for sure. Be back as soon as possible. Glad you haven't had to do the IV and hope that continues.

~Jen


kathavfm profile image

kathavfm 7 years ago from Stourbridge UK

Hi Jen

You must have seen your neurologist by now and in fact I see you have a few hubs about steroid treatment so I'll read them next.

I was on Avonex for a couple of years and then copaxone for the last 2.

We didn't have these things avaiolable in the UK until 2002 !. Happily it's been quite a while since I had a full blown relapse but when I had oral steroids I was disappointed that they didn't seem to do anything and the rekapse resolved eventually. Haven't had to go through IV steroids so fingers crossed.

Hope you are improving now. Will read the rest tomorrow as have to go out now.


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Hey Mike, It's a pleasure to meet you, but I'm sorry it is under these circumstances. Glad you are making yourself chill-lax. If your flare has been going on for 2 weeks and you are worried about getting back to work, the steroids will speed up the process. Being on copax should help you too. Copaxone takes a little longer to get working in your system, but once it does, it slows down progression. You write me if you have any questions that I can help you with. I see my neurologist tomorrow so will have something to report either Thursday or Friday depending on my energy level. I can't believe how difficult it is to just stand up and walk, I feel so much older than my 49 years. LOL


mjfactman 7 years ago

Hey Jen,

Just came upon this as i was researching the solu-medrol. I am experiencing a flare up of my MS as well. Goin on almost 2 weeks. Not sure if i want the IV, but I will see. How did you do with it? I'm also on Copaxone as well and was deathly afraid of needles. I did have to do like you said & "just do it" like Nike. I'm doing the chill-laxing thing. Had to call off work a couple days. Didn't want to, but needed to take some me time. Thanks for writing about this. I will check back and keep up with you. I hope you are doin as good as can be. I know i am now that I'm chill-laxing.

Mike


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Hi vshining, What a pleasant surprise. You are most welcome for the welcome. :)

I hope you will join my fan club as well?

Staying Strong - Jen


vshining profile image

vshining 7 years ago from Ellenwood GA

Jen

Thank you so much for welcoming me to HubPages and I'm sorry to read this hub. You know God is in the healing business. I will be praying for you my new Hubber (smiling)

Stay strong!!!


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Hi manlypoetryman, I am assuming your username means exactly what I think it means? :) I so appreciate your sincere words of encouragement and I just want to say, thank you very much! I will have to check out your poetry, I will let you know when I've dropped by. And yes, I will certainly be strong through the rough spots. :)

~Jen


manlypoetryman profile image

manlypoetryman 7 years ago from (Texas !) Boldly Writing Poems Where No Man Has Gone Before...

You are the powerful one...to be able to write of this. Words can not say enough...of how sorry it is to hear of someone afflicted with this. But in you...I think it met its' match. Be strong through those rough parts...and rest in that strength that you have...to make it through. I am saying a prayer for your symptoms to be healed as I type...God Bless!


Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Hey there Connie, thanks very much for the prayers. I'll be sure to keep you updated. I don't expect any surprises, as I told the nurse, this has been going on for awhile and I'm still able to walk, just not far and just not for too long. :) Thanks for the well done, your opinion means the world to me.


Connie Smith profile image

Connie Smith 7 years ago from Tampa Bay, Florida

Oh, Jen, I hate to hear you are having a flare-up. I pray that it doesn't last long and that you will be back 100%. Keep me updated. BTW, very well done on the hub.

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