This is the flare that never ends...

[Cira]

...At least it feels that way, my friends.

Honestly, it seems like it's something new every day. This flare has lasted since mid-October & I feel like there's no end in sight. I had an active lesion on my c-spine MRI 2 weeks ago, but my neuro didn't want to do steroids because he didn't feel my symptoms were bad enough to warrant it.

But new symptoms keep occuring & old ones seem to be getting worse. Every time it seems like one symptom starts to clear, another crops up. I've had weakness in my right leg. The night before last, I woke up in the middle of the night & wasn't able to move it for a few minutes. I have what could be ON (we'll find out tomorrow). Today at lunch, my left arm started feeling weak & heavy. It was the weirdest sensation, hard to explain, but the heavy, dead feeling was so strong that I had to move it just to be sure I still could. I could, but it took extra effort & the weakness hasn't left.

I'm calling my neuro tomorrow, as well as getting my eye checked out. I don't relish the thought of steroids, but I'm really hoping he decides to do a course. I know it's not as bad as it could be, but how long do we let this flare go on before we try to stop it? I'm struggling a bit with this recent diagnosis & this flare is not helping. I just want to feel halfway normal again & really be here for my family.

[SNOOPY]

A relapse (exacerbation, attack, flare-up) is indicated when symptoms last consistantly for more than 24 - 48 hours. Some relapses require steroids, some do not. Some people can see improvement without steroids, some do not.

Relapses can have new symptoms or old symptoms or it can be a combination of both.

If some symptoms improve, go away, or come and go minute by minute, hour by hour, day by day this is not considered a relapse but simply living with a disease that sucks.

I understand you do not like living or dealing with your symptoms, I don't think anyone with this disease does. Depending on your symptoms and/or your physical condition at the time some neuro's will not prescribe steroids.

You can also have symptoms that do not go away, these are considered residual symptoms.

Improvement in this disease can be partial or complete, both are normal with MS. When newly diagnosed it can take time for the Central Nervous System to calm down...if it does.

Hopefully you do not have ON Check back and let us know what the Opthamologist and neuro say.

Good Luck!

[lstrl]

I'm sorry you're going through so much trouble right now. Hopefully you get some good news. It would be nice if your dr would at least try the steroids so you can see if it helps you improve quicker.

I really hope you aren't stuck with permanent symptoms. I know it can be scary thinking about that. I've had a flare before that took an entire year to go away, but once it did, I didn't have any residual numbness or weakness from it. Hopefully you can recover like that too, only quicker. Good luck and let us know how your appt goes.

[rdmc]

But new symptoms keep occuring & old ones seem to be getting worse. Every time it seems like one symptom starts to clear, another crops up.

Sorry you're dealing with multiple symptoms. I tell my docs I think of MS as a "whack a mole" disease. It's like you're playing a game of "whack a mole" and just about the time you get one thing under control, or the symptom eases, another crops up to be dealt with. And sometimes it seems like all the "moles" are peaking out of their holes at the same time. I never was very good at playing that game in the arcade, and I don't do too well with it in real life either.

Hang in there.

[Cira]

Sorry you're dealing with multiple symptoms. I tell my docs I think of MS as a "whack a mole" disease. It's like you're playing a game of "whack a mole" and just about the time you get one thing under control, or the symptom eases, another crops up to be dealt with. And sometimes it seems like all the "moles" are peaking out of their holes at the same time. I never was very good at playing that game in the arcade, and I don't do too well with it in real life either.

Hang in there.

OMG - Yes! That is the perfect description.

I know that some of my symptoms will linger. The crazy nerve pain, the spasms in my back and legs & some intermittent numbness and tingling seem to be my new norm. I have doubts that L'hermitte's will ever completely leave me. Whatever. It is what it is. I'll deal with it. But, I would really like a respite from the new stuff cropping up. I would just like to find my new baseline (at least for now!) and adjust to all of this.

Ah, well, on the bright side, I think we've ruled out ON. My eye is really inflamed for reasons we can't quite pinpoint & I seem to have mild trouble coordinating my eye movements at times, but no ON according to the optho. Thank goodness. I'll take what I can get.

been there; done that

Cira,
I'm sorry you are having such a horrible time. Some of these symptoms may need attention if they are treatable (ie: nerve pain, spasms). But, as has been said, some symptoms just seem to stay with you as 'residual' ones that come and go, when triggered.

It took so long for me to get my dx, that, after being dx'ed, I was never really sure when/if I might be having a flare or just symptoms triggered. However, I knew for CERTAIN that I must be having a flare a few semesters ago.

When I could not lift either foot in my house to walk around, I knew it was no pseudo flare. Unfortunately, the steroid tx that I got for about a week, didn't work. I had to "ride it out." Seemed to last forever, and was bad timing (first time I had tried to teach two classes instead of just one at the local college).

Later, I couldn't tell if I was having a relapse of it or if it was just the stress of the end of the semester and prep for Christmas. Ended up in the hospital b/c I was so bad off (after Christmas and New Year's) that I couldn't hold up my head half of the time and had to use a manual wheelchair around the kitchen and dining room.

I actually think, now, that I may have had a bad case of Mono, at that time (bloodwork for changing meds showed that I had had mono before; I never had a case that I had known of before). At the hospital, though, the ER doc (upon hearing that I had MS) immediately put me on heavy doses of IV steroids. Mostly, I think that the bedrest and attention/care I received was more helpful than any of the steroids.

The local neuro (whom I dislike intensely) disagreed that I needed them, but I was already being treated with them. His reason was that if you don't start treating the symptoms of a flare at the beginning, the steroids won't work. I may not care for him as a neuro in general (mostly b/c of his terrible disposition), but I think he had a good point there.

I am really sorry you are having such a horrible time with your symptoms (but relieved to hear that you don't have ON). I hope you do get some relief from the symptoms that bother you the most. Sometimes MS does seem to be a never-ending roller coaster of endless symptoms. Hang in there, and keep us updated, ok?

-Sherry

[Debby]

Cira...I would consider going to the ER if you're sx continue, and your doctor is uncooperative. Sometimes a pair of fresh eyes on you can change everything! Remember, you are seeking your new normal and quality of health. Sometimes we are so hesitant to go to the ER, think we don't "qualify", but it can be a game changer to deal with docs who spend a lot of time diagnosing, and seen to enjoy connecting the dots!

[rickalex2]

I've had MS for 23 years and just relapsed after 5 years of doing great! Its like being diagnosed all over again... as I sit here watching everyone do the same stuff and I can't even wash a dish! I see your symptoms are almost exactly what I'm dealing with right now but my Neuro did put me on a steroid taper.. but just like you, just when one thing seems to be better another symptom POPS UP! UGGHH!! I dream about walking and running and wake up and my legs barely move... and my hands are weak.. when one of those symptoms just pops up out of the blue it scares the hell out of me because I don't kow if it will last for 5 minutes or 3 weeks to a year!! Good news is, I have always RECOVERED almost completely each time in the last 23 years so hang in there!!! Sometimes it only takes a few weeks and sometimes it takes months. I would definitely get him to try you on steroids to see if it works though!

[cjohnstone]

I can completely relate!! For me everything started in October 2012. I became completely numb from the chest down and had to do IV steriods for 5 days. They found a lesion on my brain and spinal cord. I also STILL have the L'hermitte's. In November my arms started tingling and going numb so they did another round of IV steriods and started me on Avonex.

Now I'm losing my hair and my feet are going numb again. I am having some blurred vision too. Extremely tired too so they gave me a new medication for that. I have been getting so frustrated by all of this....I just want it to stop.

I think the hardest part for me is accepting that this is going to be my life now.

[Cira]

Thank you all. You guys are fantastic.

I think what worries me most is the weakness in my leg. It came on so suddenly & I really felt like it would give out on me. When I tried calling my neuro last Tuesday when it started, I wasn't sure I would stay upright all day. Still not sure how I managed, other than we have a lot of counters to grab hold of. And waking up the other night unable to move it- even for a few moments- was frightening.

Unfortunately, my neuro was out sick when I called on Tuesday & since he only works Monday-Wednesday, I was told to call back Monday (yes, really). I'm frustrated in general, and now that I've been limping around on a leg that feels like jell-o for a week, I feel silly making a big deal out of it. I mean, I'm still going, so maybe it's not that bad. My neuro did call me back today, but I was working so I didn't get his call. We'll see what he says, I guess.

[rickalex2]

I know all about that leg weakness Cira! I wonder too how I manage to stay upright most of the time but we also have lots of furniture, walls and counter space to grab onto.

However, I do have a cane that I use to get me out to the car, etc. DON'T BE AFRAID TO GET A CANE! I hate it being only in my 40's but it gives you a lot of stability that you would NOT expect that it would. I was like, "that stick is going to hold me up?!".. and it does and it just makes you feel so much safer when your out and about alone.

I can use a cart at the stores but to get to the carts can sometimes be the trick. So just use it to get a cart, throw it in and then use the cart to get back to your car. Done. And guess what... people are usually a lot nicer to you when they see you with a cane so use it to your advantage! HAH!!

Now.. good news.. I saw my Neuro yesterday and I've been on tapered steroids (60 mg) for the last 5 days and by the time I saw him my hands are starting to feel better... my right leg was still weak, I am off balance and need the cane, but I can feel it working and he thinks a month of tapering the steroids will get us back again and I have higher hopes than I did before I went. So hang in there! This too shall pass!!! Love and prayers sent your way!

[Cira]

Thank you. I'm only 32 & have a tough time digesting the thought of using a cane. But, you are right that I shouldn't feel bad. I have an appt with an MS specialist at OHSU on the 11th & I'm looking forward to their input on strengthening & what might best assist me with mobility in that leg.

In other news, my neuro is putting me on IVSM so hopefully that will calm things down a little. I'm nervous because I've only had steroids once (a Medrol dose pack) so I don't know how I'll react to them. I know clinically what the possible side effects are, but I don't know how I personally will react. But I'm really hopeful that it will help get me through this flare. I would really like to feel a little normal again, so here's to hoping!

[rickalex2]

Funny. I was sure my Neuro was going to do the IV and got nervous about it since its been a long time since I did them. But I didn't know why I was nervous because I used to get them and go right back to work and no problems! But you do get insomnia and you want to eat eat eat!! Anyway, yesterday I posted a question on this website asking for positive experiences on the IV and I got a couple that now make me feel good about it again if I have to do it! Go check out their words of wisdom. One just finished and both had great luck with it!!!! I might be doing the IV also in another week or two if the prednisone doesn't work. Now I'm not worried about it anymore. Anything that works... COUNT ME IN!! Hang in there! Glad you are going to get some meds in you and you will start feeling better!!!!! AND GET THE CANE!!!! I was using a walker at 32 years old and that was worse! You won't mind the cane.