Can my symptoms be worsening but not show active lesions on my MRI?

[solaceseeker]

I had a new series of MRI's done today. Brain, T-spine & C-spine. I've been having increased problems with dizziness, head tilting to one side and leaning when I walk, numbness in my toes and feet, weakness in walking up hill or a day of running errands,a feeling of numbness (like Novocaine produces) on my face on my left side, cognitive problems, confusion, heat and cold sensitivity and the standard tingling low level internal vibration all over.

Some of these are new and come and go through out every day. Dr ordered the MRI's to see what was going on. They showed no new or active lesions! Is this how RRMS can present itself? Do old symptoms get worse and new ones appear without damage showing up on an MRI? I still don't understand what to think of all this. What does it all mean if there isn't anything active? I'll discuss with my Dr after the holiday weekend but thought that some of you may have some personal insight into helping me learn about this before then.

Thanks!

[COLOR=NAVY]** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[pennstater]

MS can be so tough, as a lot of symptoms we chalk up to MS, but they may have another cause.

Most of my relapses have been worsening of existing symptoms or return of old symptoms that fully remitted. My MRI has never shown a change. Thankfully, my neuro believed in treating the patient and not the MRI. He would do other testing to rule out non -MS causes, review stress and anxiety levels, and if all else normal, then MS was the label.

I have also had some progression, including cognition. Fatigue is a huge factor for me. When overly fatigued, I have sensory overload, affecting noise, light, heat, cold sensitivity. Also impacts dizziness/ balance. This introduced intermittent symptoms for me. They are not with me consistently. I take provigil, which helps with fatigue and clears the cog fog for me.

There are some lesions that may be too small for current MRI technology to pick up. Also, MS used to be considered a white matter disease, but they now know it can also impact gray matter. My understanding is that traditional MRI views of the brain are not sensitive to gray matter changes. But I am still struggling to understand that concept myself.

If you are concerned about cognition, you may want to discuss having cognitive testing done to develop a baseline score. A neuropsychiatrist usually does this testing.

Also, vestibular therapy may help with the sensation you feel with head movement. BPPV is a common non-MS cause that your neuro will check for. If that is cause, quick maneuver to fix and clear the problem. If negative, for BPPV, and not medicine or other medical issue, therapy may help.

I hope you feel better and get some answers. Let us know how your appointment goes.

[DonnaD]

(I keep posting this) - I was deteriorating with no new flairs, no change in MRI... but I was slowing in everything. So my neuro switched me from copaxone (after 17 years) to tysabri and I've stayed exactly the same for 5 years now. It really made a difference. (I walk as poorly as I did 5 years ago - but no worse )

[solaceseeker]

It's all making me feel a bit crazy

Thank you so much for your replies.

I understand that the symptoms can be from a variety of other issues, however I spent most of last year ruling out the debilitating problems I was experiencing with many specialists before they referred me to an MS specialist after my brain MRI I had done in July.

I have been stable for so long that to have these new symptoms (not the ones I have had for nearly 20 years) creep up on me over the last 4 months has me feeling a bit crazy. It's so ingrained in me to look for the cause of the issue and to do what I can to heal that in my body.

I was assuming that I must be having another relapse this last month, because I was forced to stay housebound for days on end. I was too unsteady on my feet, weak, walking crooked, dizzy etc. I was hoping that the MRI would show some activity only so I could begin to understand and accept what a relapse felt like for me. If this wasn't it, then I have to say I am slightly concerned what would happen to my body if it did present as a genuine attack.

Since there was nothing active or no new lesions on my MRI this time, do I just consider all of these symptoms as a pseudo exacerbation?

Is this just what happens during the course of MS even if you don't have new lesions?

What does "Active" mean? Old lesions becoming active or new lesions being created?

I've only been on Copaxone since December, could it be caused from that?

Hmmmmm........ I'm just having difficulty with not being able to pin point the source of it all, and just accept that it is caused from the MS when there is nothing definitive to tell me it is this time.

God, Grant me the Serenity to accept the things I cannot change,
Courage to change the things I can, and Wisdom to know the difference.

[TaoWarrior]

I've had similar issues with apparent relapses and worsening of symptoms but no new lesions, I think it may be that I am transitioning to SPMS but I am on a study for a RRMS drug and will be kicked off if I am SPMS, right now I have no insurance so I wouldn't get annual MRI's or neuro visits so I'm keeping it to myself while I fix my insurance situation. Once I have insurance I am going to my neuro to ask about it. The only difference is I never had anything new crop up just old stuff getting worse again.

[wallflower]

DH started on tysabri at onset 8 years ago and his mri has not changed. its kept him stable in that way, never had a lit up mri . but he just tested jc positive, so be sure your dr is testing your every 6 months. he may have to stop the tysabri now. we'll know more monday.

[ButYouLookFine]

low lesson loads...does not equate to low MS activity

My doc says that he does see some patience (few and far between but me being one of them) that have very few lesions (I have 2 in brain and have had same two same size for 8 years...so those docs said they were nothing) My new doc says they are MS lesions and he has found another in the spine along with positive spinal tap.

Any way, he says some people have very little changes in their MRI's white matter but have a lot of disability/debilitating MS...yeah me! (sarcasm). Of course my doc says this but my disability insurance says....nope....so I need to change their minds.

Between my MS and my back and neck issues, thyroid issues, Raynaulds, fibro, severe chronic migraines, crampfisiculation issues...I really can't work. Heck, most days I can't even leave the house. I make myself go grocery shopping but really...unless I'm having an ok (hyped on drugs) kinda day...it ain't happening. But they say I'm good....oh bother....

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Thinkimjob]

Yes indeed - certainly has been that way for me. Lovely MRIs; can't walk out of sight on a dark night.
I have a theory - maybe the MS lesions heal like Keloid scarring. Same place gets attacked over and over, and eventually that is it.

[Waydwnsouth1]

I'm one of those that have not shown active lesions but symptoms have progressed. My main issues are severe chronic leg pain, problems walking and fatigue. From time to time my left thigh will go numb, I get tremors in my hands and my hands will go numb.

Usually when I have a flare it's because of my inability to walk. Right now I'm in a wheelchair and when I'm not I use my rollator.

The other day I was reading some of my old MRI reports and comparing them to my latest one taken in December. What I found funny, for the lack of a better word, was how different the radiologist interpret and describe lesions in my brain. Some of them are very detailed and some appear to just be highlighted.

Some detail the lesions with size and others don't even mention them other than to say "scattered white matter foci." One report mentioned a lesion located in both the white and gray matter. That's the only report it was mentioned in.

I say all that to say it is my humble opinion you can have increased symptom activity without active lesions.

Good luck to you and fight on!

[solaceseeker]

DH started on tysabri at onset 8 years ago and his mri has not changed. its kept him stable in that way, never had a lit up mri . but he just tested jc positive, so be sure your dr is testing your every 6 months. he may have to stop the tysabri now. we'll know more monday.

I'd not heard of JC, I just googled it. I'll talk to my Dr. about that. I have concerns about using pharmaceutical meds anyway. It took a bit of time to decide on Copaxone. Best wishes to your DH.