Relapse continues or is this my new normal?

[jmm9503]

Hi, I hope everyone can help me. I started with my latest relapse 2/22/13. I went through a 3 day course of I.V. steroids at the end of March. I had relief for one week. Now I am not sure if my relapse continues or is this my "new normal". This relapse started with severe back spasms especially at night but palatable during the day. All of the other issues with the relapse, bad gait and balance problems, claw like hands etc., have abated. The fatigue continues but I believe it is caused by my lack of sleep (I get up for a couple of hours each night because of the spasms), and still wake up at my normal time, without taking naps during the day. My neuro beats around the bush when I ask the question. Can you give me your best hunches given you are the patients like myself who live with this disease. Any advice will be helpful. Thanks!!

[loopey]

Although my symptoms are different than yours; my dizziness, double vision and balance issues started in June 2011. They got better with no treatment but never went away completely. I wasn't diagnosed yet.

After a year, the dizziness and balance issues got worse again and at this time I was diagnosed. I was given steroids but the dizziness never went away. I have good days and bad days but it is always there. I have trouble urinating and I have a burning tongue. I also have difficulty staying asleep and lack of sleep makes it worse. Anyway, this IS the new normal.

I started on Aubagio in February and hope with all my heart that this keeps the disease in check and that I don't have to get used to a "new normal".

I am seeing my doc on Wednesday and will ask if there is anything that can be done about the sleep issues. I think it would be much better for you if your doc can help with your pain and sleep issues. Also, I can't deal with stress the way I used to and it makes me feel sicker so I am trying hard to take better care of myself and avoid stress.

I hope it gets better for you. It really sucks!

Since your dif

[22cyclist]

Did they do any thoracic or cervical MRIs after the steroids, usually at one month after the IVSM? This tells them if you have a new lesion, or an old one that was acting up. At the point they see it it will often no longer be lit up as the steroids will have taken care of that, but it may be larger.

Anyway, no matter, if you do have spinal lesions, they may have decided to become permanently symptomatic like you have assumed.

I have some brain stem lesions that after one relapse some of my symptoms, especially the motor ones, became permanent.

You could try; which you probably already have:

1. Increasing your baclofen dose: with your neurologists approval of course.

2. Stretching your legs, as tight legs almost always lead to a tight spasming back.

3. A physical therapy appointment.

4. In any of these cases, you need to call your neurologist and let them know you are suffering like this. They will offer more choices and help you. If not, call your PCP. They can also assist you.

I hope you feel better real soon.

Lisa
Moderation Team

[aspen]

I am no expert

and not even dxed yet, so please take this with a grain of salt ... but I'm sure that my recent, very long flare was lengthened due to lack of sleep. I was only getting 1-4 hours of sleep (since March) -- my gp started me on amitriptyline this past Monday and FINALLY I'm sleeping -- and everything else is getting better too (including some long lost optimism :-P).

[MSer102]

It might seem like your doctor is beating around the bush but the truth is he doesn't have answers because he can't predict the future. Your relapse was only 3 months ago. Some people don't start to see recovery in only 3 months so its too early to say whether this is your new normal or not.

I've had several neurologists and I want to add here that it definitely is NOT standard procedure to do another MRI a month after IVSM just to see what happened. If there was a lesion there that caused symptoms its still going to be there a month later. MRIs are too expensive to do just out of curiosity. A lot of neuros won't even do a new MRI at the time of a flare because the symptoms already are telling that there's a problem. I had a nasty spinal cord lesion come on and my neuro did not order an MRI even then. A popular doctor's philosophy is to treat the patient not the MRI.

If your still having a lot of symptoms then you can talk to your neuro specifically about medications to treat your symptoms. An MRI won't be any help for that.

And in the meantime its too early to know what's going to happen with the symptoms left over from your flare. Some people don't see much improvement for almost 6 months. It took a whole year for some of my symptoms to get better. So get to your doctor about symptom medicines and just live your life every day concentrating on what you have not what you don't have and on what you can do not what you can't. Gratitude and focusing on what's positive makes a lot of difference.

[mlissa67]

"Gratitude and focusing on what's positive makes a lot of difference."

While this may be true, 1) I don't see where the OP stated or implied that they weren't being positive and 2) it's so easy to point that out to people but the fact remains we all deal with the deck of cards we've been dealt the best we can.

[Kenmore]

Hi, I hope everyone can help me. I started with my latest relapse 2/22/13. I went through a 3 day course of I.V. steroids at the end of March. I had relief for one week. Now I am not sure if my relapse continues or is this my "new normal". This relapse started with severe back spasms especially at night but palatable during the day. All of the other issues with the relapse, bad gait and balance problems, claw like hands etc., have abated. The fatigue continues but I believe it is caused by my lack of sleep (I get up for a couple of hours each night because of the spasms), and still wake up at my normal time, without taking naps during the day. My neuro beats around the bush when I ask the question. Can you give me your best hunches given you are the patients like myself who live with this disease. Any advice will be helpful. Thanks!!

I'm sorry you're not feeling well. I don't know if this will help, but when I had my first attack, it started on Nov 28th 2008 and I believe it was over in mid February. But, it took until mid 2010 to mostly heal. I was not diagnosed at the time. I was diagnosed with transverse myelitis. But still, the symptoms lingered for a long time. I had another episode in January 2011. This is when I was diagnosed. The symptoms lasted until March when I went on the Avonex. I still have symptoms, but they are for a day here and there. Since every case of MS is different, our relapses can last for different timeframes. I think that only you can tell if it is still going on. Compare it to when you did not feel like you do now (before this relapse). It sometimes does take a long time to heal, but doesn't mean that we are still in a relapse.

[KatieAgain]

Well, in Katieville, which is where I hail from, gratitude and focusing on the positive does not do squat when you are in pain, or dizzy, or sleep 20 hours a day or in any kind of MS flare. Because in Katieville, it's citizens have determined that there is nothing positive about MS.

Darling, I don't know if this is your new normal...I sure hope not, but you neuro does not know either. I am in the same boat as you right now because I did IV Steroids a month ago and still have some residuals. So, I am right there with ya! And you know what...although I hate the word...it really sucks! It sucks bad! OK, I said it twice. So I too am asking myself, is this my new normal? I don't know, neither does my neuro. All we can do is wait.

That's what this is...a waiting game. For some symptoms, drugs can be a tremendous relief. For others...not so much.

Let me give you a glimmer of Hope though. Because in the end, Hope is all we have with MS. I had a flare that lasted 5 months. I was paralyzed...I was crawling from place to place. And one day, it was over as quick as it came and I was walking again. Never gained feeling back in three of my fingers on my left hand and I still have a little gait problem.

Once, I came out of that flare that is when my attitude improved and I had a reason to be gracious because I no longer had to use my elbows to move my body around.

Here's to hoping both of us come out of these flares unscathed.

[palmtree]

I'm not too experienced but I will give you what I have. My major flare took about 6 months to get better. If I get tired the symptoms come back. Numbness, trouble swallowing, balance etc.

I do hope that you regain what you had. Loss sucks.