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Can MS progress without new lesions?
An_204828 posted:
I was diagnosed in Dec 2009. The doctor says I have a light lesion load ( I have 11 small lesions). I have had symptoms of MS for about 6 years. I feel like I am getting worse but have not had a "relapse". ( never had a relapse that I know of ) I am much weaker and have a lot of muscle spasms and aching in my legs...more so on my left . My activity level is very low due to fatigue. I also feel like my cognitive issues are worse..increased problems with word finding, memory loss, forgetting what I am talking about in the middle of a sentence, transposing numbers wrong, using the wrong words, etc. I also experience changes in my vision...I don't have clear vision at times. I have been to optometrist and he says everything is optic neuritis ( never have had it either).
The NP basically blew off my concerns on my last clinic visit. She doesn't think I could have cognitive issues because my lesion load is "light" and there are no new lesions. She thinks I am focusing on my symptoms too much?!? Does anyone out there have a "light" lesion load with progressing symptoms? or cognitive issues?
jusbatty responded:
It's nice to know that you are experiencing the same problems I am having. My neuro says I don't have active lesions right now but I have symptoms that are getting worse and more prominant. I was diagnosed in 2008 after years of symptoms. I now avoid social situations were conversation is a must. I work for a doctor. Although he is aware of my MS does not make any effort to lighten my work load, if fact my job description grows daily. I do not focus on my MS. don't have time too. But even though I manage all aspects of the practice I'm am constantly reminded of the disease due the same symptoms you have. Fatigue is the biggest problem. I feel as though I'm carry an elephant all day. My vision comes and goes and I tend to lose my balance just standing at the copy machine periodically. Sometimes my typing is just jibberish or the same group of letters are missing from every sentence I type. I can only chuckle. But yes, like you, I would like some straight answers.
hackwriter replied to jusbatty's response:
Hello jusbatty and Anon,

I share your problems of fatigue, balance, strength, memory and word-finding struggles--all with only three lesions!

On top of that, my flareups have produced no new lesions yet have resulted in worsened disabilities and permanent damage to the point where I qualified for disability in 2009 and thus stopped working.

My neuro has never used my light lesion load as an excuse to deny my worsening condition; his clinical exams of my coordination, balance, strength and reflexes have always supported the worsened symptoms I have reported.

Anon, your NP is woefully misinformed. Lesion location has more to do with symptoms than the number of them. Be reminded that you can get "zapped" in the same locations and experience worsening, as I have. You don't need to develop new lesions to have a flareup or to experience symptoms.

That is all assuming that you both have relapsing-remitting MS. If you have never had flareups and have a minimum of 9 brain lesions and at least 2 spinal lesions, a positive LP and EPTs, I would think there might be some suspicion of a PPMS dx among your neuro team. Hard to speculate sometimes what doctors are thinking!

Hope this helps.

arealgijoe responded:
Eleven lesions LIGHT? A lot depends (wearing your's?) Where and I guess also SIZE. I ahve more dawson's fingers than digits on my hands, clasic MS lesions. I also ahve a couple simpnal lesions. ONE inparticular is problematic, but due to its LOCATION (real estate anyone?)

One of my spinal lesions is in the C5-C6 area, NOT a good place because its an are known for turning people into quads. (paralized). I ahve partial numbness in my right hand and problems with both legs. I can still walk SOME, but I use a powerchair part-time and have a scooter for larger stores malls and outings.

While I was formally Dx' last Jan & on Coapxone, I have a long long Hx of Sx going back a good 50 years. My MS neuro at the VA thinks I am in the early stages of going from RRMS to SPMS (secondary progressive). I have lost a lot of mobility these past few years.

MY understanding is that in progressive stages, Sxs can worsen w/o any visable change in MRI. I guess its the nature of the MonSter.

AMLYGE responded:
Kim pretty much summed it up... remember that your MRI only show the activity that is going on that moment so if a MRI was done at another time it could have looked much different!

The thing that bothers me the most about the cognitive part of MS is that it is invisible to most people unless you know what you are looking for and the observer would have to follow you all day to know what you were talking about -- very annoying -- my boss "wrote me up" b/c of the result of some of the cognitive issues i was having because he saw them as performance issues not what i KNEW they were and now that my FMLA is on file at work he won't go back and remove it... << very frustrating (sorry i will get off my soapbox now) consider cognitive issues as an invisible disability

now with respect to your question about progression w/ only a few lesions... YEP that's mee!! I dunno where the line is drawn on "light lesions" but I was told by my DR that my MO was worsening and that it might not always reflect that on my MRI but my symptoms and relapses are making it OBVIOUS

Hope this helps... take care
holly1416 responded:
I was diagnosed almost exactly one year ago. First the neuro, before my MRI's and Evoked potenetials, told me he didn't think I had MS because although I was having what looked like a clasic initial flareup, his "bells and whistels" weren't going off. But, surprise! And, now he tells me all the symptoms you also mentioned aren't from my MS.

I have only one lesion. Although my 1 year follow up MRI is Wednesday. But, I feel just like you do. "Light lesion load", now there's some ridiculous terminology.
uncognative_in_oregon responded:
I'm glad someone knows how I feel. they have only given me a "high risk" diagnosis. one lesion, but I have the cognative issues- they drive my husband crazy some days. I'm scared of saying the wrong thing at "work" (interning and hoping to get hired for computer repair). the last couple months, I've had issues with numbness in my arms and upper back. the last MRI I had was last june (nearly a year ago). they only checked the brain at the time, but now they want to check the spine too, and the numbness really freaks me out. at first, even with less sensitivity on my left side, and the numbness issues, as well as the infrequent weakness in my arms, they were going to wait until june to see what was going on. however this week I've had shortness of breath and severe back pain followed by numbness, a "migraine" as I call it, where I started with vision loss for about 20 minutes or so, followed by excruciating pain behind my eyes, mostly my left, which had the optic nueritis to begin with. (the pain dulling to an ache, only to flare up again, lasting days.) so I get the feeling they are just humoring me, since they have messed up on the insurance authorization and faxing the paperwork for the MRI more than 3 times. I've just about made up my mind not to ever go back and just acccept my slow decay without help or diagnosis.
hackwriter replied to uncognative_in_oregon's response:
I have a feeling you wouldn't put up with the slow decay without help or dx for too long, you sound like a fighter to me!

If you haven't already, definitely call your doc to report the shortness of breath, back pain and numbness and insist on an appt. that gets you in ASAP. Since you've been experiencing numbness for several months and then more symptoms recently, it's odd that they wanted to delay the spine MRI until June since your disease is obviously active. And besides, the dx should be based heavily on your clinical symptoms anyway, though I'd be hard-pressed to find a neuro who would dx without a few lesions showing, too. That's the frustrating part.

If you aren't on pain meds and you want to be, they should be prescribing some during this next visit, too, you shouldn't have to suffer. And if you aren't happy with your care, there must be other specialists in your area to see.

I hope you won't go down without a fight.

Rory26312 replied to uncognative_in_oregon's response:
I'm with Kim on this do not go quietly , advocate for yourself and your family. Even if you decide to accept "slow decay" do so on your own terms not because some uncaring ,unwilling medical professional (if that is the right term for these people) tells you it's all in your head or your just doctor shopping or looking for pain meds .There are far too many to list.

You are your own best advocate and sometimes that means been rude .Remember that you pay the bills and that makes you the boss so do not be afraid to fire them and go looking for someone who will do the job.

Stay in touch and let us know how you are doing.

Maggies51 replied to uncognative_in_oregon's response:
Can someone tell me what it means when the docs tell you, you have a few lesions that have gotten bigger...Was diognosed in July of last year and have had a really bad time with cognitive, especially memory...I've lost alot of my childhood on up...I can be reminded of things, and sometimes I remember and sometimes I don't. I'm turning numbers around when I'm typing them and I'll get into the middle of a convo and forget where I was goin with it. I also say odd Valentines Day at work, I was wishing everyone a Happy Thanksgiving...didn't do it once...I did it many times. My legs are very weak...if I get down on the floor at work to do something, I'd better have something there to help me up or I'm not getting up on my own power...there was a point a couple of months ago when I was waking up screaming from the pain in my the point of my husband calling an ambulance to take me to the hospital.
Maggies51 replied to Maggies51's response:
They gave me a shot of morphine and checked my legs for clots...there were none and they sent me home with pain meds, which I didn't take but one cuz they made me reallly loopy.
And when I was diagnosed, I had 16 lesions.
Collielover replied to holly1416's response:
You say you were "diagnosed with MS"; but you say you only have one lesion. Where did you go to get diagnosed? I only have one large lesion; but I have about 5-6 other tiny ones. The neuros keep telling me that the "tiny ones can be anything, even natural aging process." For years my sx continue to grow and get worse. Now I have extreme difficulty walking; horrible fatigue; leg and arm weakness; cognitive problems, including lots of memory problems; dizziness; and intermittant electrical sensations when I move my head certain ways; plus several other ones. I don't want it to be MS; but right now I think I would be greatly relieved to finally get a diagnosis confirming it. Where do I go to get the help? I live in Texas.
hackwriter replied to Collielover's response:

You can contact your local National Multiple Sclerosis Society chapter for a list of MS specialists in your area.

PegWa replied to holly1416's response:
I know this was 3 years ago but I just came across this post. I have all the problems and symptoms mentioned plus extreme sensitivity to heat but I only have one lesion. My neuro says it might be MS but he doesn't think so, thus I am left in limbo with no diagnosis, nothing to explain these issues and pain and horrible fatigue. People expect e to carry on as always....even my husband sometimes acts as if I should just be completely normal because there is no diagnosis! It sucks! I am just not sure where to turn!

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