Spastic Always?

[mom9335]

My son was dx last Dec.  He has been numb or spastic from the chest down, both legs, MS hug and right hand since then.  The spasticity does not relent.  He was told this means he probably has PPMS.  He is able to sleep and looks like he walks fine, but he knows what a struggle he goes through to walk.

Do any of you who have RRMS remain numb with no remission?  Do you return to "normal", never having remaining spasticity, or is is there all or most of the time? I guess we are wondering if this ongoing spasticity is proof of PPMS.

By the way, he is on LDN and taking doctor monitored supplements, and his level of Vitamin D is where it is supposed to be. All his numbers are great....big mystery, huh?

[Lulu54]

Dear Mom,
Thanks for the kind words and loving wishes from a mother.  I have to tell you  the only person I cried to about my dx is my own mother.  She is now 85 and watched her sister suffer for years with MS and I knew it would devastate her to know I had this disease as well.

It broke my heart to tell her that I had MS.  Thanks to all you moms who walk with us through this.
With love, Lulu

[mom9335]

Thank you for your comments.  I have been having trouble understanding his condition, and after not quite a year, it is becoming evident that it is PPMS.  And, reading some of the info on the MS sites, later diagnosis of males with spinal cord lesions seems to fit PPMS.  

It is really hard to watch and research and yet not be able to offer any solution or new infomation for my son.  Your analysis was very helpful in my understanding of the effects of spasticity and the criterion for PPMS.  And, yes, his major symptoms have never remitted, and for now, seem to be "stable" if there is such a thing in MS.

You who suffer from this disease, are the only ones who really know what it is to see your life change because of  a degenerative condition.  But, believe me, the pain is very real for those of us who love you.  And, the desire to somehow help heal or make it better  and not be able to,,is devastating, even when we see you doing fairly well.  

So, we'll just keep searching and hoping that the answer is coming, and coming soon.

Thank you for your understanding.

P.S.  Yes, the Vitamin D is being taken now that the horse is out of the barn, but who knows, maybe it is of some help since the information on the D has changed so rapidly within the last few years.

[Quixotic1]

Hi, again.  I have some unrelated thoughts to your questions.  First I am sad that it appears to be PPMS.  And I am in awe of your son who pushes through it and continues with his life.

In my reading spasticity is not something that I have heard of remitting.  This, of course, does not mean that it can't, but I haven't come across it.  The level of spasticity may vary with the level of stress to the body, but it seems that once it shows, it stays.  My spasticity has NEVER improved since the onset.  I'll admit that it is mild and limited to my right lower back and leg,  but, my neuro is firm that I have RRMS.

Numbness is a sensory problem, where spasticity is a motor problem.  I definitely have heard many people talk about numbness improving.

I have heard and read about numbness improving and even going away, though most often when numbness improves there is still some sensory abnormality in the area, it seems.

There has been no good evidence, that I have seen, that Vit D will "reverse" any of MS.  Once the cascade of immune events has been triggered (possibly partly because of the low Vit D) it continues on it's own and is no longer governed by the Vit D status.  On a personal (anecdotal/testimonial) note.  When I started my high dose Vit D (6000IU/day) I "felt" better immediately.  Nothing about the MS changed except I felt better.  My Neuro scoffed at Vit D , calling it the "latest panacea," but placebo or not I felt better and still do.

Too, I owe you an apology for being so strident about the higher dose Vit D.  Though I do not believe that you can take huge doses indefinitely without potential of toxicity, the inital 50,000 IU followed by 10,000 IU or less daily is becoming commonplace.  I will be more careful in the future.  Sorry, to have made you uncomfortable here if I did.

When I was reading the LDN boards, I did see that initial side effects of starting LDN or raising the dose was an increase in stiffness or spasticity.  So Craig and Elaine's experience seems plausable.  Maybe there is a lower (or even tiny) dose that will have some of the QOL benefit without sending spasticity into overdrive.

From my reading,  PPMS is typically related to a higher level of atrophy in the CNS, especially in the spine.  The symptoms that you are relating I thinks are all indicators of spinal cord disease and would seem to indicate a high level of it.  When spasticity still allows ambulation (as opposed to tying a person into a bed-ridden pretzel) the spasticity is more likely to be from damage to the spinal cord than from the brain.   This may be some of what is prompting the doctors to say it is PPMS.  Also, there is no clear history of sudden attacks of worsening in PPMS.  Each new thing just appears and slowly, insidiously worsens - without you being able to say, "This symptoms began on such-and-such a day."

I don't know if any of this will be helpful.  this are just the thought I had.

I'm glad you are still with us.

Quix

[mom9335]

Thanks for the prompt replies.
Yep, he has considered that the dosage of LDN may be the cause of  much ( not all) of his ongoing spasticity.  I think he plans to adjust/drop the dosage.  

Elaine, Interesting that Craig made that connection with the LDN.  Will keep you updated as to what happens.

Shell, docs at U of MI and Mayo are not in favor of his taking DMD.  If it is PPMS, there is no research to show they are of any value so far.  He was on Rebif, but felt so lousy, it wasn't worth it to him, to take it.  And, it was their  opinion that, since symptoms have not remitted, it has been PPMS from the start. New check-up after December.

He amazes me in that he refuses to let MS stop him from hunting, work, golf, etc.  He keeps pushing no matter how bad he feels. And with four kids, he doesn't have much choice!  So far, his body is cooperating.  We all know that with MS, we DON'T know what will happen day to day.

Will keep you posted as events occur.  Thanks for the support.

LGK54, he says the same as you do....just get used to it all in a funny way.  Course, it would be wonderful to have it go away for a while, or better yet, forever.  Just Mom wishing.

[monotreme]

Hi.  Craig and I figured out something this week that was a bit scary.  He had noticed that the week of his endoscopy he had less foot spasms, and was more comfortable.  he usually has spasms on the bottom of his feet along with pain.  His legs are spastic in some muscles too.

Anyway, I realized that the week of the endoscopy he wasn't taking LDN in prep for the morphine and anesthesia.  After the endoscopy, his foot spasms and leg spasms worsened again.  So, he went off LDN and his feet are less painful.  He went and had his legs stretched by a therapist (we pay cash for this) and his legs hurt less.  He is able to walk more.

I hate to say this, but I think alot of Craig's recent problems with spasms may have been the result of the LDN.  

Just a thought.  As heartbreaking as it is, Craig is off the LDN.

Elaine

[sllowe]

Hey mom9335,

I'm sorry to hear that your son is spastic all the time.  I thought he was doing better than this.  Did this just start?

Ok, well, if it were me, I would ask the Dr. exactly what, based on his symptoms and imaging leads him to believe he could probably be PPMS.  He'll be able to tell your son this.  It is important because they may change his course of meds.  

I remember when you mentioned to me that he chose to not go on the DMDs, and I greatly respect that decision, because it's an individual choice.  And an important one because you have to feel comfortable with what you are taking so you stick to it.  However, having said that.  Since his Dr. is mentioning this to him, I would suspect this Dr. may have brought up a discussion DMDs.

I hope others have more to add here ref. PPMS, but I want to assure you Mom that even though his levels of D are good and he's doing all he can to mostly naturally ward off progression, it's not something he did or didn't do to cause this.  I promise.  I hope you and your son find comfort in this.

There are meds for spasticity. We have a great write up on spasticity in our health pages.  Maybe something would work for him symptomatically.  I hope so.  

We're here for you, always.
ttys,
Shell

[Lulu54]

Hi Mom,
I was just dxd with RRMS, but do have a numbness in my right leg that has been present for over a year with little change. I've just grown accustomed to it being there, in a strange way.

Hopefully someone will be along to help answer your question....

My best,
Lulu