What are your relapses like?

[Shiela]

Are relapses often or sometimes the same? What do you experience when you have a relapse? Have you ever gone to ER when you had one? Are you able to contact your neuro after hours if you have one?

[SNOOPY]

I have never been to the ER for any of my relapses. All 5 of my relapses have been about the same except some have been severe and some have been milder in comparison.

My relapse symptoms:

- Increase of LHermittes

- mobility severely affected/very difficult walk

- increase in bi-lateral leg weakness

- Tremors

- Anything touching me --- sheets/blankets, clothes, shoes/socks, a gentle touch/hug brings extreme pain everywhere (extreme pain)

- insomnia/fatigue

- numb from the waist down and that includes the girlie parts

- feet swell and are extremely painful which can also cause even more problems with mobility.

- increase in vibrations/buzzing

I have never tried to contact my neuro after hours, I don't see the point, I know what my options are and those choices (imo and in my case) can wait until the next business day.

[SherryBerry72]

Pain all over...

Snoopy. I have sensitive skin where clothes, bumping into things, leaning a leg or arm on a table (or what not), etc. can bother. Holding my phone in my hand can be uncomfortable. I've had this off and on for years. I guess I could consider the times I get the symptoms... "flares." I'm just not sure what it's a flare-up of. Other than achiness and a feeling of being run down, this is about the extent of it. Oh, and my skin feels like it's burned and raw. 9 yrs of this with no vest answers is quite unnerving. When you get these feelinga, are they constant 24/7 for days, weeks, months? How would you explain the oatten? If you don't mind me asking. Thanks.

[SherryBerry72]

sorry

Sorry for the odd and mispelled words...I'm typing on my phone.

[SNOOPY]

Hello SherryBerry,

What I experienced was not simply sensitive skin, it is extremely painful as if my nerves are exposed, sitting on the outside of my skin. It's a type of pain that is very hard to explain. I would be in tears just trying to put socks/shoes on. My husband would not sleep very well for fear he might touch me causing more pain.

The extreme nature of this pain is 24/7 for the length of the relapse, usually 4 to 6 weeks.

[MrsBones]

My relapses have run from bilateral ON to a numb chin and throat to total numbness from the chest down and just about everything between...I relapse frequently. While some old sx do worsen (I have PRMS, so that goes w/o saying) as parts of some relapses, I can't recall having the same relapse twice.

I have never gone to the ER for a relapse or even anything directly MS related. Well, not exactly true... I was in a nasty car accident recently and because of the relapse I just happen to also be having, I have new areas w/o sensation. I went to the ER to be sure that between the impact and the glass that was everywhere, I hadn't been hurt without knowing it.

I have called my doctor after hours with the intent of leaving a message and received a call back from the dr himself. As SNOOPY said, a normal relapse can be dealt with the next day. Unless there's some indication that something more than a relapse is happening (in which case, I'd go to the ER and not wait for a call) or there's some possible med issue, I'd leave a message simply so I wouldn't forget or blow off calling the next day.

[chalknpens]

no relapses that "count"

I don't seem to have relapses, though they call mine RRMS. I had two separate "events" (numb feet in 2003 and headache/nausea/light sensitivity/dehydration in 2007, which caused the MRI and caused the diagnosis.)

Since then, taking Copaxone, fatigue depression anxiety and rib pain are constant symptoms, which doesn't count as a relapse, and blurred/double vision in hot humid weather, which doesn't count as a relapse. Why am I taking injections for RRMS, if I don't have relapses? I'm ready to stop.

[MandaJ]

My flare ups have consisted of my whole right side going numb, tremors, and my most recent one is I get a light headed feeling and my left ARM jerks uncontrollably, and my left leg goes limp. My neuro told me to head to the ER if I loose something big. Like motor skills, dragging my leg, ect. Unless its during work hours I can just go into the office and he will see me right then.

[SNOOPY]

My neuro told me to head to the ER if I loose something big. Like motor skills, dragging my leg, ect.

The only thing a neuro or ER can do is give you steroids and/or symptom management medications.

Motor skills/problems are what my relapses are mostly about and as I said in another post, I have never been to the ER and I wait until the next business day to see my neuro, I have never called after hours.

I prefer not to do steroids. Even severe relapses that affect motor function can reslove without steroids...for some. Recovery from that type of relapse take more time and hard work on the patients part and has nothing to do with steroids.

Please do what your neuro recommends but don't expect anything other than steroids when going to the ER or even your neuro's office.

[SNOOPY]

Recovery from that type of relapse take more time and hard work on the patients part and has nothing to do with steroids.

I need to clarify my statement (it was early and I wasn't quite awake )

Steroids can sometime help to shorten a relapse but they do not change the outcome of the disease or the relapse.

Unfortunately, steroids won't give you back your strength and endurance lost during a relapse. It may require the help of a Physical Therapist (PT), Occupational Therapist(OT), and continued exercise and hard work on the part of the patient. This can be a very slow and frustrating process and for some, what was lost is not regained.

[Hawkgirl]

When a symptom I've had before comes back (like I've been walking all over the zoo with my kids, and suddenly my legs conk out and I'm buzzing all over and my hands and face feel like spiders are crawling all over them), I consider that a flare. I cool down, rest for the remainder of the day, and usually that takes care of it.

When I have a new symptom, I consider that a relapse. And if it's uncomfortable enough, I call my neuro and schedule an appt. The neuro needs to know about new symptoms, to evaluate whether your treatment is working.

I have only called a neuro once after hours. I suddenly couldn't breathe, I was gasping for air. I was sure MS was shutting down my lungs. But I was hesitant to go to the ER. You all know what a hassle that is. So I called the neuro and gasped out my problem and asked her if I should go to the ER. And she told me she couldn't advise me on that; it was completely my call. Can you believe that? After that I hated that neuro.

Anyway, I *did* go to the ER and it turned out I was hyperventilating. I felt like an idiot. But I was still mad at that neuro for leaving me dangling in the wind like that.

[Shiela]

I was just wondering about the ER because Friday night after office hours my whole body--head to toes went cold, numb, and I couldn't move except a few inches by myself. I was practically paralyzed, except for some wrenching from electrical jots and twitching. My neck and throat got stiff and I could only get out a few words in a whisper. (Couldn't move the hair that was itching my chin away from my face).

The doctor had called in a script for steroids in the late afternoon so we went to get them, but this all happened within 40 minutes before we could get go. I was thinking, "What in the world would I do if the Dr. hadn't already called them in". I was so desperate and scared to stay home alone that my husband carried me to the car so I could get them into me as soon as possible.

It didn't get better until around 10 AM the next day. My hubby had to spoon feed breakfast to me. I don't know if I would have the guts to not take anything and just wait for it to go away. I was glad to hear that if I went to ER they would give me steroids. It's a relief in case it happens on the weekend again.

I've had bad things happen in the last two years past but none of my doctors knew what they were and I NEVER had one like this. I was just diagnosed last month and am just figuring this all out. I am just now realizing that the troubles I had in the last two years were MS exacerbations.

[Shiela]

Hawkgirl, I have found more answers here than at my neuro. Thanks for the advise on when to call him with symptoms. This has been confusing for me. With my first neuro I sent him everything that was happening every month because we didn't seem to be getting anywhere towards a diagnosis. I wanted him to take notice, like "HEY ARE YOU LISTENING!" After a few months, I got another neuro who is great when I see him but other than that is surrounded by iron walls. He made a dx very quickly and I stopped sending my monthly report because I thought, "There! Got someone's atte ntion and a dx". Then came confusion about what I SHOULD be reporting. Ok. That makes sense. Just new stuff or worsening stuff. Thanks for the input.

[Shiela]

...oh yeh, my skin was on fire everywhere too. It looked like there was a screen over the top of my eyes and everything sounded REALLY loud. Altogether yucky.

[SNOOPY]

An exacerbation (relapse, attack, flare-up) all mean the same thing --- an increase of old symptoms and/or new symptoms lasting continiously for more than 24 hours.

Hawkgirl:

When a symptom I've had before comes back (like I've been walking all over the zoo with my kids, and suddenly my legs conk out and I'm buzzing all over and my hands and face feel like spiders are crawling all over them), I consider that a flare. I cool down, rest for the remainder of the day, and usually that takes care of it.

This is what is called a Pseudoexacerbation and is not a true exacerbation. Pseudo exacerbations are self-limiting. They are due to viruses, the flu, walking too much or doing more than your body is used to (overdoing it), infections and heat/cold.

Once you have cooled down, rested, the flu, virus or infection has resolved your symptoms will return to what is normal for you.

Symptoms that come and go and do not last continiously for more than 24 hours is simply dealing with this disease and not uncommon for those with MS.

For more information about relapses and pseudo-exacerbations:
http://www.nationalmssociety.org/abo...ons/index.aspx