Relapse or not?

[greenandchic]

Starting two week after my diagnosis back in mid January, I started having a replace.  Sudden spasms that would cause me to lose strength in my legs and arms (falling), that get worse when I look up or lower my head, more vertigo, some nausea that would get so bad I couldn’t eat for a day or so until I used 420, fatigue, along with the other annoying symptoms I had before the replace: ON, pens and needles in my feet and nose.

I was running in December and now I can only use a spinning bike because my vision is so bad when I exercise and I’m so unstable. I also cant really do hand weights because when I raise my arms, I get spastic.  

It’s been almost two months this replace started.  Is it possible that its not really a relapse, but just how its going to be permanently?  

Has anyone ever “deteriorated” rapidly with no return?  

[essdipity]

Well, I'm hardly an athlete, more of a life-long klutz, but still, I may have something to add here.

I've been in PT for about a month. The original assessment showed moderate muscle weakness at a lot of points (who knows how much was due to MS?) and fairly impaired balance in a bunch of tests.

Yesterday the PT did a new assessment. Quite a lot of muscle sets remained at the same moderately weak level, some actually improved a half a point, but none got worse. That's really good news. But what's even better is that my balance has improved significantly. Although I can't do the tandem walk (heel to toe), I can now do the tandem 'stand-still" without a lot of trouble. And quite a few similar improvements.

In MS, a PT evaluation is always a good idea. I'm not sure how long my insurance will cover this, but I plan to find out soon. My therapist said that if MS is the diagnosis and improvement can be demonstrated, this can go on indefinitely. I wonder about that. I don't want any ugly or expensive surprises.

Still, I highly recommend this process. I have exercised regularly for years, and this is the first time I've had documented improvement.

ess

[Quixotic1]

We clearly need some of our athletes to speak up here or have someone do some research.

I know a little on the topic, but not enough to explain it all.

Pushing neurologically fatigued muscles is detrimental.  If the weakness is from lack/loss of nerve signals (as in MS) then no amount of exercise is going to strength the muscle.  That is for sure.  Pushing it beyond it's new limits can result in a huge downslide with an exacerbation.

The problem with MS is that it can be very hard to "gain" muscle strength.  Yet you want to prevent becoming deconditioned.  So it can be a fine line between pushing and relaxing.

Everyone else???  I know that some of you know this stuff.

Quix

[Guitar_grrrl]

I can really appreciate your concern with staying strong and fit.  I, too, want to for as long as I can. (Cycling and Yoga are my activities of choice).  Quix, thank you so much for the advise re: cooling devises.

Greenandchic, do you press through with your spinning when you're feeling weaker than usual? Or do you wait until you're feeling better?  I guess what I'm really asking is, is this harmful?

Cheers,
Guitar_grrrl

[greenandchic]

Quix - Thank you so much for this.  I thought cooling was just for the sake of comfort, now I know its mandatory.  Do you have any websites you recommend to purchase?  I did a Google search and found a few.    

[Quixotic1]

Okay, this is where we talk about aggressive cooling measures.  These are mandatory if one is to exercise vigorously.  There is no sense in maintaining a fit body if the act of staying fit progressively destroys it.

The exercise experts in MS recommend things like:

Pre-cooling with a cool bath or shower before exercise.

Cooling during the exercise.  This can be done using a combination of things like using a fan to blow cool air on you while exercising.

Wear "cooling garments."  These come in a variety of forms from cooling hats and neck bands to the more effective cooling vests.

Colling vest can be simple (and a little more messy) consisting of moist garment that allows evaporation, to sophisticated cooling vests that provide more active cold rather than just evaporation - like the kind you sometimes see marathon runners wearing up until the race.

There are ones you can buy in a whole range of prices and patterns for ones on the internet.

Then after working out it is appropriate to use a cool shower or bath to completely cool down.

All through the activity you should consume cool liquids for internal direct cooling.

These are not just suggestions.  They are necessary steps to exercise safely with MS.

Google Multiple             sclerosis cooling garments

and                            exercising with multiple sclerosis

Quix

[greenandchic]

Thank you for your responses!

Quixotic1 - My doctor hasnt categorized my MS yet.  A few weeks ago, he said it was too soon to tell. I see him again the week after next so maybe I will have an answer then.  

Kenny - I am so sorry to hear about your sister. My heart goes out to you and your family.

Deb - I am on Avonex now.

Lulu - I do work out at an execrated rate because I must stay fit, keep my weight down and whatever energy I have left up.  Brisk walking increases my temp so I cant just do nothing.  


Thanks for the info and advice! :D

[Lulu54]

Hi Greenandchic,
Sorry i didn't see this earlier this week- i've been a bit preoccupied.

You mention only being able to use the spin cycle bike - are you still exercising at a rate that will increase your core body temperature?  Even a one-half degree increase is enough to cause your symptoms to "scream" .... please reevaluate your exercise program and do only those things that you can do that don't involve overheating.

Do I remember right that you were going to do copaxone?

I hope you are seeing some improvement - if not, please call your doctor.

my best,
Lulu

[Deb61]

Are you taking a disease modifying drug?  These drugs have helped lots of people with MS.  According to my neuro, he has a patient that hasn't had a relapse in several years.  The longer you go between relapses, the better, because your brain has time to heal.  

This disease is different for everyone and unpredictable.  Plus, for me, each relapse is different--I can never know how long a symptom will stay or how severe it will be.  You may notice that your symptoms will disappear or nearly disappear.  You also may notice some of the symptoms stick around and others go away.  Some people, don't ever get relief.  I think I've had MS for years, and I fit the second scenario--some symptoms have disappated and some of the symptoms have remained.

I know I sound about as clear as mud, because that is the nature of the disease!  When in doubt, call your neuro.  I did this quite a bit when I was first diagnosed.  He can be the judge as to whether or not he needs to see you in order to prescribe some medications to help with the symptoms or shorten attacks with an IV steroid.

Best wishes,
Deb

[Quixotic1]

Yes, some people do die within a short time after diagnosis.  In extremely rare cases it may be within months of diagnosis.  Some, like Kenny's sister within a decade.

Kenny, I'm sorry you lost your sister to such a severe form of MS, but do realize that this is very rare.  I'm sure this weighs on your mind.

When we develop a chronic, disease that causes disability we ALL should look to preparing for our future and the future of our families.  But, it does no one any good to sit and worry that this will be our own fate or to remind others that it can rarely happen.

For 90% or more of us, MS will shorten our live expectancy by only a few years - ONLY A FEW YEARS.

The current statistics that talk of greater decreased life expectancy are referring to people who, for the largest part of their lives did not have access to the MS drugs.  A century ago people with MS lived half as long as people without MS.  Twenty years ago the number was that we lived a good 20 to 25 years less.  Now that number is down well below 10 years and it is dropping steadily because of the use of the DMDs.

That is one of the good parts of this forum.  We have access to very accurate information and there are some great scientists here who can help us interpret it.

Quix

[Kenny12345]

im sorry to hear about that. My sister went through the same thing she was diagnosed on 10-17-98 with in a year she was in a wheelchair with no mobility from the waist down. she died on 5-9-2006 i know this is rare and probably wont help but it makes for a rough time and you should be prepared for that if it happens

[Quixotic1]

Hi, Sorry I missed this question.  It does sound like you went into a new relapse if your symptoms had been stable for at least a month before the new symptoms started.  I gather your doctor diagnosed you with Relapsing Remitting MS?

The new symptoms sound just awful.  Sorry you are going through that.

About the length of time you have been in this relapse - Relapses can go on longer than 2 or 3 months.  We have had people in what seemed to be an acute relapse for several months, before they got some improvement.  So, there is no reason to fear that these symptoms are now permanent.

The other part of your question is whether some people go downhill rapidly and do not return.  The answer is yes.  The good news is that they are rare.  So there is great hope and reason to believe that this will bottom out and eventually improve.  Just not soon enough to suit any of us.

I hope this helps.

Quix

[Wobbly]

Hi there...I'm not yet Dx...and don't have any answers...only my opinion...and from what I think...a relapse can last how ever long??  could be awhile .. or a short time...and it matter what type of MS you have...sometimes you can feel abit better, but not completely back to how you were before the relapse...

I'm sure others will come on and give some answers too this...

take care and hope you feel better soon
wobbly
undx

[greenandchic]

Thank you so much! :D

[ShockedToday]

I don't really have an answer for you, just wanted you to know that I hope that you feel better soon.  I'm sure someone will come along that knows a lot more about ms than I do.