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Posted: Mon Apr 07, 2008 6:34 pm Post subject: symptoms without inflammation?
Is it possible to have symptoms without inflammtion?
I asked about this in another thread. I just had an MRI last week which showed no new lesions or active lesions, no enhancement. but I have symptoms that are coming back from an 8 month relapse. I only had 1 month symptom free pretty much.
My neuro feels I am still RRMS, but from what Iread wouldn't this make me SPMS?
Joined: Sep 11, 2007 Posts: 679 Location: southern California
Posted: Mon Apr 07, 2008 7:45 pm Post subject:
Hi 777-
It sounds like you're looking for some answers.
I wondered all the same stuff when my husband was diagnosed last year.
Here goes....
It's possible to have MS "symptoms" without inflammation, because of axonal damage done during a relapse.
My husband is RR too, and he has pain, spasms and fatigue from his first presenting flare last year. He has not been "symptom free" since his diagnosis, but he has not had any new symptoms. He just had his 2nd MRI, no inflammation, no new lesions...but the old spots are still there, just not enhancing.
The diagnosis of RR is based on lumbar puncture banding (different in progressive), location of lesions, and other variables I'm sure your neuro could explain better than I.
A true relapse manifests in new disabilities. It's not the exacerbation of old symptoms, because a relapse involves a different area of inflammation in the brain or spine. Sadly, only axonal regeneration will stop the damage you already have. That's why MS is such a terrible disease.
If you have a continual progression of new symptoms, without a relapse, you will be classified as progressive.
That said, try to focus on the stuff you can control...diet, supplements, exercise, medication, whatever. The RR label means there are more options available to you to hopefully slow down the disease progression.
all the best,
AC _________________ Husband diagnosed RRMS March 2007
pursuing endothelial healing
Copaxone, Swank, supplements, laughter
I was looking to get onone of the trials such as the revimmune or stem cell. I had this disease over 10 years probably more about 12-16 years.
I do well, I an still walk and fairly symptom free except for this relapse I had last year that lasted 7 months. legs weakness, horrible fatigue, dizziness. I had a MRI and it showed no new lesions, it did show one on the spine but they dont know if it is new or not but it was not enhanced,
I am bummed because I wanted to try the revimmne but also a little concrned I did turn progressive, My neuro said they consider me RRMS at this point. But with the leg weakness coming back, makes me wonder if I am SPMS. There are no treatments for SPMS.
Those of us who have had this disease for a number of years are well aware that there is no correlation between symptoms and lesions that show up on MRI's.
This is a known fact, and you can find research to substantiate this claim by Goggling the research. On your other post, I had posted that hundreds of lesions will show up if a person is run through a strong MRI vs a weaker one.
Just because you have gone through a recent MRI and showed no lesions does not mean that you do not have any.
As cheerleader said, this is an ongoing disease and even though you may feel good the disease is progressing at various rates in different people, sometimes without lesions showing up.
You will know that you are SPMS when you begin declining and your symptoms do not resolve like they did when you were relapsing/remitting. Sometimes it takes a few years to figure out the switch.
Check through some of the other forums to learn about people that have tried the antibiotic approach or Campath and Revimmune to see how their symptoms have been reversed or helped by these measures.
Your doctor may or may not be receptive to trying one of these treatments for you as they are not mainstream as yet.
Joined: Sep 11, 2007 Posts: 679 Location: southern California
Posted: Mon Apr 07, 2008 8:38 pm Post subject:
Hey 777-
I say take your neuro at his/her word, and call yourself RR, don't label yourself as progressive...then find a treatment to help you. What GWA is suggesting is to look into everything available. One of the crabs? Campath? A clinical trial? With your diagnosis as RR, these are all open to you. Only Revimmune looks at inflammation.
Everyone's MS is different. Your script has not been written. Keep researching. Find some friends/family to help you. I wish you more answers and options.
AC _________________ Husband diagnosed RRMS March 2007
pursuing endothelial healing
Copaxone, Swank, supplements, laughter
Posted: Mon Apr 07, 2008 9:16 pm Post subject: Re: symptoms without inflammation?
777 wrote:
Is it possible to have symptoms without inflammtion?
I asked about this in another thread. I just had an MRI last week which showed no new lesions or active lesions, no enhancement. but I have symptoms that are coming back from an 8 month relapse. I only had 1 month symptom free pretty much.
As Cheerleader has noted, it's possible to have symptoms without having any new inflammation. One of the symptoms that led to my diagnosis 8 years ago was neuropathic pain in my foot. The other one was optic neuritis. It took about a year for my eye to no longer be heat sensitive to either hot weather or hot showers. However, I have had continual problems with my foot ever since. The severity of those symptoms varies greatly with my level of stress. For example, one time when I was busy packing up my apartment and getting ready to move I had burning sensations going up and down most of my leg. These subsided once I was able to get some decent sleep however they still crop up from time to time. Much of the time my foot feels like it's wrapped in hot sand paper however it's usually pain free when I first wake up in the morning. Anyways, symptoms can vary and come and go over time and this is likely due to the nerve damage associated with the prior attack with which the symptoms first appeared rather than with a new attack. However, to be certain, you may wish to consult with your doctor.
What is important and probably responsible for disability is neuron density and not white mater lessions, if density drops from 20-25000 neurons per mm2 to less than 15000 then there is serious problem!
What is important and probably responsible for disability is neuron density and not white mater lessions, if density drops from 20-25000 neurons per mm2 to less than 15000 then there is serious problem!
Joined: Sep 12, 2006 Posts: 875 Location: Dayton, Ohio USA
Posted: Tue Apr 08, 2008 5:51 am Post subject:
Lucky Sevens,
I have been dealing with the same sort of issues. I'm now at the point where I can walk about 200 yards before my legs, balance and dizziness start going "wonky" and that is farily new as it took much more effort a few months ago. My last MRI showed nothing enhancing either and I was puzzled and then thinking "I'm SP". Everyone is so different. I am basically a walking Uthoff's symptom and from what I read that you post it sounds like you are maybe a bit like me. I never have had the "put you on the floor" relapse, but I keep losing function. My ON still flares up EVERY time I get hot and has for 7 years. However, that doesn't mean I have any new disease activity. My neuro. says that my leg issues are probably much the same. Except for the bladder thing, if I've been sitting down for a while (an hour or two in front of the tube for instance), I feel almost MS free until I get up and start moving around and putting forth effort.
It's like my MS does it's damage "behind the scenes" and then shows up when I try to do something. I don't know if that makes sense or not, but I don't wake up with my symptoms even close to where they will be in a few hours, but as time goes on during the day more symptoms appear when I exert myself even a little bit. I was absolutely convinced they were going to see nothing but a blob of white where my spine should be since I have recently had it really bad in both of my legs; especially the lower legs. But when the MRI came back, there were still only two (they were there before) lesions that weren't enhancing, yet the cranked up loss of function was new. So I was thinking new lesions new lesions and new disease activity all the way. I've almost confused myself with this post but it really is how it works for me. If I could just stay in stasis until a cure is found........... _________________ "When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"
Joined: May 04, 2006 Posts: 42 Location: NASHVEGAS,TN
Posted: Tue Apr 08, 2008 8:28 am Post subject:
it is my understanding that if you have symptoms without inflamation then that doesn't actually mean you progressed into the next stage. rrms you can have old symptoms flare or new one with complete or partial recovery. now the partial part is the tricky one. im not a dr. but i would say you are rr just from what you said. hope all this helps, and i hope you feel better.[/b]
Joined: May 04, 2006 Posts: 3400 Location: Mid-Michigan
Posted: Tue Apr 08, 2008 8:59 am Post subject: Re: symptoms without inflammation?
777 wrote:
Is it possible to have symptoms without inflammtion?
Just to make sure, you're referring to increasing/new symptoms in the "absence" of inflammation (as shown on mri) and NOT the continuation of old symptoms?
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Posted: Tue Apr 08, 2008 9:06 am Post subject: Re: symptoms without inflammation?
Lyon wrote:
777 wrote:
Is it possible to have symptoms without inflammtion?
Just to make sure, you're referring to increasing/new symptoms in the "absence" of inflammation (as shown on mri) and NOT the continuation of old symptoms?
Bob
well I had an attack at the start of my pregnancy, that was back in sept. It started very slowly with leg weakness. In oct they prescribed IV steroids. Didnt help. I got weaker, my legs got stiff and I had severe fatigue. Finally in Dec I had IVIG. Not much help either. I delivered in feb.
A week later I was almost symptom free. now they are coming back and body aches. My MRI didnt show any new lesions or enhancment. After a long atack like that and no enhancment I would say SPMS. My neuro says at this point she will stick with RRMS.
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