Relapses vs flare of Chronic SX

[Sidesteps]

I think this is difficult for many of us who are in limboland or early on in our disease course.  I know I'm in the probable category and likely will convert in the coming year/s... my Neurologist has informed me to contact her should anything change.

I *think* I can tell the difference but I have to admit, I am a little afraid I'm missing some minor relapses that overlap my chronic sx... I get all sorts previous symptoms but the one or two things that stand out to me is the crazy amount of fatigue and muscle weakness that seems much worse during a flare.

My symptoms started in May 2010 with twitching and jerking then followed by swallowing problems but it wasn't until October through December that I REALLY noticed feeling sick. I could barely keep my eyes open and holding a blow dryer was bad. Taking a shower required a 30 minute cool off period where I'd usually fall asleep.

I can have a few days where I can feel the stress on my body and feel tired, generally weak and maybe notice an increase in sx's but when it gets to the point that I feel like I have mono with it... I KNOW that's when I should call the doctor. Mostly it seems to be a hindsite thing for me right now and I don't want to get paranoid... but, I don't
miss something. Like my ear aching - I didn't realize it was a sign of TN. The Neuro-Ototologist had to tell me that.
I can see the flares after I've been through it but when I called regarding the symptoms the past Neuro's, didn't see interested. I'm doubting myself.

My question: What is it that makes it obvious to you that you are in a relapse and should call the doctor?

[Sidesteps]

Thank you Shell,

I have chronic symptoms I deal with which are improved symptoms I've had prevously. What I'm noticing are things that did not bother me AT ALL for the last few months are returning and stronger than I've seen since my last flare. I think I am in a mild (so far) relapse so I did send my doctor a note.

I will go into detail to get open feedback: I haven't had stabbing pain in my abdominal area since the Fall of 2010 or twitching. I haven't had facial irritation/twitching/pins and needle pain since March 2011. I'm getting a host of sensory issues - vibrations, cold/wet spots, creepy crawly's. I'm weaker in my legs and right hand. I haven't had that since June 2011. My nystagmus (eye's not connecting or bouncing) is back. My balance/coordination is off. I'm dropping and wobbling again. These have returned as well as pressure under my rib cage..and I am just SOOO tired (feel drugged when I'm not.) I also have been unusually constipated (- is that normal?!!)

The symptoms that are chronic are my twitching, vision symptoms (blurry, double vision), some mild myclonus, mild foot drop, spasticity, tremor's, some intermittent eye/orbit/facial pain, tinnitis, palatal myclonus. These have honestly been fairly mild since early September but are not at a moderate level. I've had extreme but I'm not quitethere yet.

That is the difference for me. I'm able to now see them and explain it to my doctor. Luckily, my doctor's office has something called myonlinechart so I'm able to communicate to her and her RN by email. I sent the list of symptoms and explained which are new and which are worse, waiting for her to advise me and told her I'd call if it got worse.

What about you all?

[sllowe]

SS -

So many good comments here - well deserving of a bump for those struggling with relapse vs chronic sx

[Sidesteps]

The only way they can really tell is by seeing it on the MRI with contrast. I think overall they go by how badly your symptoms are compared to your baseline.

For me, I did not know what was wrong with me when I went to the doctor but the swallowing problems along with balance/coordination issues was concerning enough for me to request to see a Neurologist. By the time I saw him, I was a struggling with a wide variety of issues... over the course of the next few weeks it got worse. He was following me pretty closely then (every other week) so he could see the decline.

The chronic symptoms can be part of the baseline --- it's if they are new or not. I actually do think I'm going to call the doctor on my symptoms the last few days. I'll update you.

[Mummy76]

How can they tell that a lesion is active?  

I feel like I have constant symptoms coming and going. I have my second MRI in a few weeks.  Until then I'm not calling my neurologist because I worry she'll just think I'm a complainer or a hypochondriac!  

[Sidesteps]

Thanks Lisa,

I'm with ya...and agree. It seems once an area is attacked it weakens and we get intermittent issues there. I think the only real symptoms that I haven't seen in awhile is the HUG under my rib cage and the shooting pains in my abdomen - both of those made me feel like I might be having a heartattack.

The stabbing pains aren't fully new - just seem to be increased and stronger. I might have a few a day. I sort of feel like I've got some neuralgia this time. I've got some patches of pain that are itchy.

Usually my flares have last weeks and it's not until I'm really "into it" that I realize "Yup, I'm sick." this isn't going away. :( Even in the worst of my flare in the fall of 2010 it was the Neuro that picked up on all sorts of things and had to point them out.

I seem to be a hindsight girl but I can honestly say I feel crummy right now. Watch and wait...but after my nap. ;)

[LisaJF]

I've noticed with myself from the beginning when I came to this forum that when my odd neurological symptoms appeared and went away, I thought I'd never see them again, although one thing remained constant was the fatigue.  My fatigue however, has its highs and lows where there are days that I feel almost normal, then the next it could feel as though someone gave me anesthesia and Im dragging @$$ walking through mud and weak in the legs.  

Now, I see that each time something happened and lasted longer than 3 days to even a month, it returned.  Perhaps the left leg feeling dead with quadriceps burning/tightening/spasming happened once but it lasted months but then a new symptom would appear such as left arm burning but only half of my arm (tricep) all the way down to my two fingers (ring and pinky).  

My point is anticipating symptoms to return or feeling a flare arising may or may not disappoint you.  You never know when its going to hit you, therefore there is no crystal ball.  You may feel like youre in the initial stages of a flare but it lasts for 6 hours then goes.  You never know.

Sorry about your new stabbing pains in your legs.  I hope that rescinds itself quickly.

Much <3's to you.

Lisa

[Sidesteps]

correction: *that* not what

[Sidesteps]

Thanks ladies, I think the hard thing about where I'm at is while I'm not in an active relapse, I FEEL the disease working behind the scenes. This crazy fatigue and muscle weakness that lingers but seems more like not having a few bad nights sleep or at the beginning of an illness.

I think I might be in the early stages of a flare or maybe need to get checked for a virus (I've had a stuffy nose for a month or longer.)  I guess - it's official I'm in watch and wait mode as I'm seeing a pattern of increased symptoms at the moment.  

Right now, the only thing bugging me that's new is these stabbing pains in my legs. Feels like someone is taking a needle to me and when I itch it, it goes away but leaves a sensation. Ohhhh, alright, that's probably worthy of a note to my doctor. lol ~ OK OK

(Sarah, I think you should call your Neuro. Get back in to see him. I know you know what to but catching a lesion active is key for you as it is for me.)

[sllowe]

Hi there,

Such good advice above - It is hard, and you are on the right track. You mentioned " get all sorts previous symptoms but the one or two things that stand out to me is the crazy amount of fatigue and muscle weakness that seems much worse during a flare."

Those who had a bad flare, or 1st attack will make those comparison from then to now. So, you are using your baseline - that's a good thing.

I do the same thing. For example, most times I feel I can't hold my head up at the end of a day, but as hard as that is -  fatigue is so much worse.  And, had I not experienced it during my 1st attack, I'd not have known that there is a big difference.

Jot big issues down too and note how long they last until improvement if even only slight. This can all help.

[LisaJF]

That's a hard question, especially from me because I don't know if my health issues are directing themselves to the path of MS or something else.

All I do know is that YOU know your body, what you used to do, what is status quo (at least for now) and any minor changes in your body that inhibits you to achieve activities of daily living, eliminating, risk to fall, eating, etc. then YOU are your only advocate and I wouldn't give a rat's @$$ if the Neuro was disinterested.  It's your damn body and health that is going through this, not theirs.  

While they sleep a good night's sleep at night and wake up in the morning agile and ready to face the day, our course is a bit different wondering how many spoons do we get today to make it through?

Get a calendar (that's what I did), jot things down when they happen.  Those little boxes makes sure you keep it short and sweet (to the point).

That is of course, my opinion.

Lisa

[sarahw244]

This is a great question and something I am wondering too.  It's hard for me to tell because I haven't felt good for awhile.  I always have my chronic problems, but then every few weeks I seem to get hit with something new or a great worsening of my old/chronic stuff.

It will be interesting to hear the responses to this post!
Sarah