I've had increasing symptoms for a year and a half. (Five years ago I had one year of similar symptoms w/normal MRI.. they disappeared until this bout).
What began with mild tingling/numbness has evolved into intermittent heaviness/weakness in limbs, frequent spasms in feet and legs and hips, feeling of wrap around R. foot and leg, creeping and pressure up L. side of upper back, electric shock-like feelings on sides of neck when I look over shoulder, cognitive/memory problems, dizziness/balance problems that currently prevent driving a car, swallowing difficulty and intermittent stabbing pain behind eyes....my eyesight does not seem overly affected other than things looking 'foggy' once in a while..usually when I go outside.
A recent MRI (without contrast) shows 15 small T2 lesions in the white matter of my brain. The initial radiologist assessment states that they are most consistent with small vessel ischemic disease, but that demylination cannot be ruled out....their appearance is not consistent with an MS diagnosis.
The neuro I saw recently (referred through emergency) had her radiologist look at the MRI and he's declared that it is definitely NOT MS. She has gone further to say that the lesions are simply due to normal aging (I will add...I'm 47...never had high blood pressure...physically fit, non-smoker) and that she does not believe that my symptoms are even of a neurological nature.
She initially insisted that I had a 'muscular' problem, however an EMG ruled that out. The Dr. who administered this test told me that my problem appeared to have more 'central' origins but the neuro-muscular junction was definitely NOT the origin or the problem.
The neurologist had a real nasty attitude.... refused to listen to all of my symptoms and would not read the list I had written up, but instead seemed intent on merely running me through a few basic tests and basing her opinion on that. Admittedly, the results of such a cursory exam will likely vary from day to day or even from hour to hour as my symptoms fluctuate greatly. My reflexes have been extremely brisk for over a year and my R. leg recently goes into a little convulsive spasm, yet she still deemed my reflexes as being 'normal.'
Does anyone here have any knowledge regarding whether or not 15 lesions can be completely normal...particularly in light of symptoms that 'appear' (to me anyway) to be very neurological in nature?
I'm considering paying to have an MRI WITH Gadolinium as the first was done without and I've heard that one with dye could possibly rule out MS. I live in Canada and a dr. ordered MRI could take many months.
Would so appreciate any and all opinions regarding this matter of 'normal lesions due to age.' Thanks so much.
Wow! I think it's definitely time to go shopping for a new neurologist. Many of us on here have had to seek help from a different neurologist than the one we originally were seen by. Run, run away from that doctor. This neuro is way too dismissive of you.
Although MS typically shows up only on one side, I do have a friend who has primary progressive MS and she has symptoms on both sides. And some of my symptoms are on both sides too.
15 lesions in your brain is NOT normal, especially with your age.
I might warn you about attempting to get an MRI on your own. Many imaging places refuse to do personal MRIs. Most will only do an MRI if you have a doctor's order for it - even if you're willing to pay for it on your own (at least in the US).
If you do an MRI using contrast, it would not necessarily rule out MS. In my opinion, it might help to rule it in, especially if one of your lesions is currently active (so it will light up using contrast).
I'm really hoping that this neurologist's report does not influence my GP's opinion unduly. I've had trouble with my GP in the past asking me such questions as "why do you want a diagnosis," and "what are you going to do when the MRI comes back showing no lesions?" .....I highly suspect that up until lesions actually showed up on my MRI, and I had actual tremors in my hand and really brisk reflexes that I could show him, he had considered my symptoms to be psycho-somatic.
I live in Canada and it can be really difficult here to even get a family dr.....all referrals to specialists must go through the family dr....makes it really tough if you don't like your specialist.
Fortunately in this case, the neuro in question was just someone I saw through the urgent neuro clinic as referred by an emergency physician. (I went to emergency one day due to extreme weakness and loss of balance). I'm a little worried though that her assessment of 'not neurological' and 'normal lesions' may be taken by my GP as an excuse to dismiss me as well. I'm thinking though that if I'm agreeing to pay for an MRI that he would willingly sign the form.
LOL...as you can see, my esteem as a patient has been worn down through negative experience and I don't have very high expectations of the doctors I have access to! The initial neurologist I saw who ordered the MRI did send my dr. a report saying I should have a follow-up MRI in a year....so perhaps he's not completely dismissive of the 15 lesions.
Anyway, Kelly, thanks so very much for taking the time to answer...your words resonate with my own assessments and intuition regarding my situation and it's wonderful to receive validation. :)
I have an MRI report very similar to yours....the radiologist's report reads something like ' small T2 subcortical hyperintensities most consistent with small vessel ischemic disease, migraines or vasculitis..... but that demylination cannot be ruled out.'
However, when my neuro looked at the MRI disc....he concluded approximately 10 white matter lesions consistent with MS.
I also have a very abnormal neuro exam: hyperactive deep tendon reflexes, positive babinski, positive hoffmans, positive rombergs, ataxia As well as optic neuritis, and abnormal SSEP.
I agree you need a different neurologist. Can you ask around here for someone that lives close to your area.....or do a search of MS specialists in your area....you definitely need a second opinion.....even if you have to drive a while to see one.
Geez! Your GP sounds like an idiot, too! He's wondering "why do you want a diagnosis?" Hello???? If you end up having MS and it's not the primary progressive type, there are disease modifying drugs that you can start taking so you'll have less disability in the future.
I hope you can get another MRI where they use MS protocol in the scan..
Hi Daisy Girl...thanks for commenting. Indeed our MRI results do sound similar... your results and physical tests do point towards an MS diagnosis. Do you know yet what the next course of action is that your dr. has planned? Was your MRI with contrast and if not will you be scheduled for one that is? Just curious as to how this process usually progresses. All the best to you in receiving the answers you are seeking.
Yes, Kelly, it is pretty crazy to be asked such a questions. In fact, I sat stupidly staring at him before I could even come up with an answer..it seemed that obvious to me!
I see him on Monday and I'm quite anxious to see what he suggests in terms of moving forward.
I have been dx with RRMS since Jan 2010.....My MRI in Jan was with and without contrast. However, no enhancing lesions were seen on the MRI with contrast. It was the T2 hyperintensities on the regular MRI that got me my dx.
I wish you the best, and hope your appointment on Monday gives you some answers or atleast a plan of action.
My understanding is....that if you have symptoms consistent with MS, and everything else has been ruled out, and you have lesions. At that point, it doesn't matter if the lesions are typical or not. It is not normal to have 15 lesions!
Keep in mind, that Active lesions show up with contrast as T1, hyperintensities. The big test with MRI is dissemination in time. If you have 15 T2 hyperintensities today and 18 T2 Hyperintensities in 6 months, that is dissemination in time,
One MRI and 50 lesions can not be diagnosed as MS under the McDonald Criteria, At the most, more than two lesions and one clinical attack is CIS. That because there is no dissemination in time,
Above everything else, you have to have dissemination in time AND two clinical attacks to different neurologic areas for dissemination in space.
maramor....didn't you say that when you first had neurological symptoms a few years back that your MRI then was normal? and now new neurological symptoms and a new MRI with 15 lesions.
I think that would be considered dissemination in time?? and two clinical attacks to different area.......eyes (optical) and electrical shocks in neck area and numbness/tingling in the legs? as well as other symptoms.
OK. Most doctors will not compare MRIs of different techniques, so you can't compare a 0.8 Open MRI T2 PD with a 1.5 T2 STIR. So you can;t really go by prior study vs. current study unless they are pretty close as far as Tesla and Sequence. Also, most docs will only compare clinical attacks in your medical record.
The Neurologists get to make the rules as what constitutes dissemination in space and time. The point of my comment is that if you think you have MS and are trying to prove it, you have to look at criteria 1 through 4 in the revised McDonald Criteria. In the basic case, you need two T2 lesions and two attacks to diagnose RRMS,
My understanding of the McDonald Criteria is that MS can be diagnosed with two attacks (relapses) and two objective clinical lesions (as seen on a neuro exam....such as hyperactive deep tendon reflexes, spasticity, positive babinski, paleness optic disc, etc...)
Nothing else is needed....Clinical evidence will suffice.
My one and only MRI with out contrast, found lots (unspecified number but stated as chronic) of T2 hypertenses white matter and deep white matter lesions, stated on the report that my age (45) makes these lesions inconsistent with small vessel disease. I dont understand fully why but the reports conclusion still states 'Chronic ishaemic small vessel disease' lol. I suspect its because the slamb dunk location of the corpus callum (? CC) didn't have a lesion showing so no MS dx. I'm still in limbo dispite now having multiple dx sx consistent with MS and nothing to explain them but MS. I think your neuro was a dud, just like mine was!
Daisy girl, your right but since MRI's its 'rare' that a neuro will dx with out MRI lesions in the right MS locations, clinical signs are no longer the strongest determinator of dx, wrong but so true.
Bob, technically your right but if the MRI is looking for MS then the assumption is that the MRI would be done using MS protocol, with and with out contrast. One MRI is enough to dx if just one lesion in the bunch lights up on contrast, the one MRI is showing old and new lesions, that is dissemination in space and time. One MRI of the spine and one MRI of the brain is enough (often done at the same time), if one T2 lesion is found in both that meets dissemination in space and time, 2 attacks and 2 lesions.
The problem lies with neurologists that do not acknowledge patient history, dismisive of prior documented evidence of relapsing remmitting sx, the patient maybe on their 2nd or 100th known attack of sx but if it is their first visit to a neurologist they are incorrectly recognised as having their first attack. Clinical signs of dissemination in space and time can and do get dismissed by some neurologists making up the rules. Have you read 'the lies my neuro told me' written by Quix, shocking some of the stories of what happens despite having all your ducks in a row.
Wow...I'm so grateful for all of your contributions....I feel I've jumped ahead miles in my understanding just reading your comments....although I've spent hours upon hours sifting through information on the internet, nothing quite compares to real life stories from real people! Thank you, Thank you, Thank you!
I had wondered myself if my first experience combined with my present experience with these symptoms would speak to the McDonald criteria of dissemination in time. The original neuro I saw does have those symptoms on record, so I will definitely bring this up next time I see him. But yes, I do get the sense that the radiologist report stating that the lesions are NOT consistent with lesions of MS certainly does hold considerable weight here regarding the opinions of my doctors.
All patient history is subjective. It can never be a clinical sign. Relapsing remitting symptoms are just that: Subjective symptoms. They are not clinical signs or clinical lesions unless they are detected on examination. Anything a patient says is subjective. If another doctor reports it in their examination, then it is a clinical sign. Sorry, the insurance companies are really the ones that are defining these rules for doctors.
Most US insurance companies are asking doctors to demonstrate disease progression with "objective evidence." Hyperreflexia is not considered "objective" in the eyes of the insurance company. Don't blame the doctors about counting lesions, this is really what the insurance companies want.
One MRI can show more than two plaques, and an exam can show more than two clinical lesions, but that does not meet the "dissemination in time" test. A second attack would, but the docs really want to see more lesions (also an acceptable test for dissemination in time.)
As much as Quix talks about the neuro's lies, I think she would agree that much of the medical decision making is driven by the insurance providers, Having a medical diagnosis of RRMS and having the insurance company reject it (they just send you to another doctor that follows their rules) does the patient no good.
The insurance company scenario doesn't apply in my case as I live in Canada, however, the scenario of ridiculously long waiting lists and too few doctors definitely creates its own problems.
The uneven dr/patient ratio here seems to have increased the lack of empathic, human response from many doctors as they're churning patients through the system like it's a mill.
Here it seems that medical decisions are driven by an overburdened system and doctors who themselves feel overburdened by their patient load. To even get an appt. with my GP these days takes about 3 weeks.....a specialist can take anywhere from 4 to 7 months....an MRI from 5 to 8 months depending upon the symptoms. Therefore even one appt. with my GP becomes of exaggerated importance as if I forget something, it will be near another month before I have access to him....an appt. with a specialist is something that must be approached with a concise plan and when important symptoms are dismissed, you leave feeling like you've just stacked on another year to your wait for a diagnosis.
It sounds to me like both systems definitely result in patients not receiving proper treatment or consideration.
Re: the issue of 15 white matter lesions being normal for a 47 yr. old, I found a few studies that support my view that this is not so.
Gerard and Wiseberg3 study found subcortical lesions in only 10 per cent of patients older than 60 years unless cerebrovascular symptoms or risk factors were present, and the same article written by a doctor went on to say; "occasionally, one or two punctate subcortical hyperintensities may be found in a young healthy patient with no focal symptoms, no risk factors for vascular disease, no prior history of trauma or neurological disease, and imaging features that do not fit with any of the above entities....but the lesions most likely represent focal gliosis related to a prior subclinical infection or some indeterminate developmental event."
I'll be armed and ready with these studies this morning in case my GP is trying to push to opinion of the nasty neuro I just saw.
Last week I had the chance to talk to a local MSologist about the question of brain lesions being normal at a particular age. His reply was that lesions are not normal, regardless of age. That something must be responsible for those lesions to form, beyond the aging process.
He said that it isn't unusual to have brain lesions from the trauma of birth. He discussed the violent nature of natural childbirth and the stress on a newborn's brain can leave signs of lesions for life.
He also talked about trauma from things like whiplash or head injuries causing brain lesions. And of course the all too familiar lesions from migraines and ischemic disease.
Ultimately his summation to my question was a line we are all familiar with - location, location, location..... the location of the lesions means so much more to the neurologist than the mere presence of lesions.
Just a bit more to add to the conversation here that perhaps helps to understand why it isn't always easy to see lesions and name their cause.
The appt.with my GP today went okay. The ANA test I had a few weeks came back negative (I had a positive one last year), but the ENA came back positive...the subtests for specific antibodies all came back negative though so not sure exactly what that means and my GP didn't seem to know either, except for the fact that he will not be referring me back to a rheumatologist based on these results. I'm thinking that these results are positive though in that they likely elminate lupus ....so I feel some headway has perhaps been made in terms of eliminating causes.
I'm still waiting to see if I'll get back in to see the original neuro who booked my MRI. (I guess he only does follow up in very special cases and instead simply makes recommendations) If not, he's booked another MRI for a year from now based on the 15 non-specific lesions...I guess at the very least this is a step up from the nasty neuro who is claiming that despite the 15 lesions on my MRI it is actually perfectly normal.... and that my symptoms are not neurological origin.
I'm still debating whether or not to pay for an MRI with contrast....(I can get one for just under $2000.00)....my dr. signed the form so I could book it in the next few days if I choose to go ahead. I'm wondering now though if I need a cervical spine MRI with contrast as well...? I did have my cerv. spine scanned in the last but it was w/o contrast. and it showed no lesions...then again, they couldn't get a clear image as I couldn't stop swallowing during the exam. I want to make sure that if i spend the money, I'm getting the proper exam done.
I'm also awaiting some old records from an eye dr. I saw ten years ago...I recall having a real painful eye condition that affected my eyesight for over a year and required me to use steroid drops...the dr. would never give me a name for what I had but now I'm wondering if it may have been related to optic neuritis.
I also had an MRI five years ago when I had similar symptoms for a period of time and it showed no lesions ...so if my brain has aged and as a result, developed 15 lesions, it's all been in the past 5 year period.
Thanks again to all of you for the input...it helps alot! :)
If you choose to go the pay for your MRI route.....please remember to do your homework and find a really good MRI with a 3T (Tesla magnet) and make sure it is done according to MS protocol.
Also, do you know if your MRI five years ago, and your most recent one, were done on the same machine or the same Tesla magnet? Do you atleast know the magnet strength of this most recent one?
Do get your medical records from the eye doctor.....many MS patient's first symptom is optic neuritis. So that may really help in finding a dx for you.
So sorry to hear yet another story of a dismissive, rude, ignorant and cavalier neuro. I have had the same experience, and I can relate to the frustration and anxiety that ensue. Please remember what so many others have said before, here-you know your body better than anyone else, and if you KNOW that something is wrong, don't allow someone else to create doubt where there was none before.
I have discovered that, just because someone has a bunch of letters behind their name and an attitude of superiority, doesn't make them an expert, or even oblige them to care at all about the impact on your life. As disheartening as this experience can be, please keep up your resolve and continue using this forum to bolster your confidence, knowledge and spirits.
I'm not sure how the system works in your neck of the woods, but, like the others said, try to get a recommendation, from another patient, to a specialist (MS neuro if possible). I find that this is the best way to ensure you aren't wasting your time with another DUD!!!
Regarding your MRI questions, I would suggest that you look into both brain and C-spine(and maybe T-spine) with/without contrast at least on the brain imaging. Also, if you have had previous eye problems, maybe check into a VEP-visual evoked potential, which checks the speed of nerve transmission along your optic nerve. The test is so sensitive that it can detect nerve damage even before you notice any problems with your vision.
My experiences have included being told "There is no neurologic diagnosis I can give you."; "You do NOT have MS."; "Are you having any other problems at home-besides this? Have you considered seeing a counseler/therapist?(as I am crying in the office due to frustration)"; "I can't GIVE you a neurologic disease! What else do you want me to do?"
After all of this, my last MRI showed 2 new lesions, and two of three previous lesions had shown changes in size. This, along with my history over the last year, has prompted my neurologist to push towards probable MS and start me on Rebif while waiting to see the MS Specialist in March. In all, this was a fairly short journey at only a year since my first appt with the neuro(although symptoms have been around for several years, at least).
I pushed for this MRI before the end of the year due to insurance issues, I requested most of my appointments (vs scheduled follow-ups) and was the primary driving force behind finding the cause of all of my symptoms-most of the doctors I have seen would have been content to sit and wait until I went blind or became paralyzed before they felt any urgency with my situation.
Be proactive and determined, but try to avoid being pushy or insulting (if possible). If you aren't getting answers that make sense, ask as many questions as you can-the health pages here are a good place to start. Maybe you can pique someone's interest if only you ask the right question.
Good luck and keep us posted! Please remember to bring any questions you have to this forum-there are SOOO many people here with such vast information, they can be an invaluable resource!!
daisygirl....I've been searching and I'm not sure if there are any 3T MRI machines in my city that offer patient paid scans. I agree, if I'm paying out of pocket I definitely want to make sure that I'm getting the best I can get. Also...my GP filled out the form but in a very cursory manner. He has not indicated MS protocol or spine and I know the MRI clinic requires these instructions from the dr. I get the sense my GP isn't very educated regarding neurological issues and therefore I'd really like to have a conversation with a neuro before I go ahead and book an MRI on my own...hoping I can make this happen. Thanks again for your wonderful input!
jenandherboys...So great to hear you are finally getting some answers....Your comments are an extreme comfort to me. The level of anxiety and emotional pain I've been experiencing due to such dismissive behavior on the part of my dr.'s has surprised even me....I find myself getting panicky and breaking into tears off and on...it truly feels at times like being caught in a bad dream where I can't wake up. I've resolved to try and focus upon the things in my life that are good...I'm finding mediation really helps get my mind off my frustrations and symptoms...it seems that the more I flail ineffectively against the injustices of the system, the more entrenched in them I become. Indeed, I need to trust in my own assessments and intuitions regarding my own body and try not to allow the opinions and behaviors of rude doctors to influence me regardless of their credentials. I'm finding this a real challenge.
Some of the treatment I've received from dr.'s has me shaking my head in disbelief...so unprofessional...so rude...so uncaring. Makes me wonder why someone would become a dr. if they do not enjoy interacting with and helping people.
The neuro I saw at the urgent clinic actually angrily shushed me when I tried to explain my symtoms (symptoms) (one of them being an inability to form thoughts into words) and then rolled her eyes and sighed loudly each time she had to ask me to clarify myself. My husband who was with me had to ask her at one point to 'please calm down' as she was practically yelling at me for trying to explain a symptom that she had not asked about. As a result of her attitude, I barely got through a fraction of my symptoms. She focused upon the intermittent muscle weakness and declared that I had a muscle disorder that was completely unrelated to the brain lesions. A negative EMG said otherwise. After that, she was completely dismissive and told me she will not see me again as she does not think I have neurological issues.
IN Canada, All specialist referrals must go through the GP or ER dr.....I'm wondering though If I did my homework and went to my GP with a name, if perhaps he could/would arrange an appt. for me...definitely worth looking into.
maramor, I want you to know that many here have been treated horribly as you have been. It's an outrage that physicians think they can act in such a cavalier and abusive manner.
A doctor that asks why you are looking for a diagnosis is one who is trying to cover the fact that they have no idea what is really going on. People seek diagnoses because they hope for treatment.
You definately have something going on neurologically, it could be MS or any one of the mimics known. It can take so long for a clear diagnosis and because the neurological diseases are inherantly difficult to diagnose. All of us have a different presentation too.
I get so mad at these doctors!
I'm sorry to hear that you have such difficulty getting an MRI there. I know our U.S. health care is flawed but I can get an MRI today if my doctor orders it. But our expenses are huge.
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