Hi and welcome,
"I'm just worried she's also going to tell me I'm crazy and there's nothing wrong with me :("
One of the best ways to circumnavigate the idea its mental health, is to actually get your mental health fully assessed. Mental health is a legitimate medical condition just like any other potential cause and it is often beneficial to have the evidence that a mental health condition has been ruled out...it's pretty common for MSers to have had a mental health assessment at some stage during the diagnostic process, can't hurt and can actually be a lot of help, so definitely worth considering if you are really stuck in limbo...
To meet the McDonald MS diagnostic criteria your required to have at least one lesion in at least two out of the four specified areas juxtacortical, periventricular and infratentorial, spinal cord.
Juxtacortical in relation to MS means lesions that abut the cortex and involve the subcortical u-fibres, unfortunately juxtacortical is a general term that is often poorly understood, and gets misused or overly used by radiologists and physicians when lesion(s) are next to or close to the cortex (see radiopaedia .org radiology references articles)
Periventricular means next to the ventricles. They are an ovoid shape and look a lot like fingers, which is why they are commonly referred to as Dawson’s fingers and they are a more typical sign of MS because of the small number of conditions associated with them.
Infratentorial means beneath the tentorium of the cerebellum. and low at the back is where the brain stem and cerebellum are, which is located in the area under the cerebrum. Infratentorial lesions are another more typical sign of MS
Spinal cord; The spinal cord is the most important structure between the body and the brain, a vital link between the brain and the body, and from the body to the brain. Spinal cord lesions in MS are relatively small and peripherally located and often cervical. Spinal cord lesions are not unique to MS, there associated with conditions like ADEM, Sarcoid, Lyme disease, Traverse Myelitis etc but someone with a spinal cord lesion 'and' a cerebellum or brain stem lesion would be very suggestive of MS.
**To be honest your MRI report isn't worded as we'd generally see when it's suggestive of MS, i'll break it down as much as i can for you but it's not screaming MS imho;
"2 of the neurologist proof read my MRIs with never sending them to Radiology. " i'm confused by what your saying....a neurologists interpretation is diagnostically more important than a radiologist report, a radiologist just writes what they see, the neurologist is the medical professional who determines your MRI's diagnostic significance.
In diagnosing MS the neurologist uses all the patients combined suggestive/consistent test evidence, including their abnormal neurological clinical signs, MRI findings, blood tests, nerve conductor tests, LP etc etc
"bilateral cerebral hemispheric white has multiple verl little discrete foci" from my understanding its likely stating there are any number when there isn't a specified number mentioned, it doesn't say chronic so it's not even saying the number is significant, all you can say from 'multiple' is there is 1+.
Lesions are likely microscopic to tiny, typically lesions less than 3 mm in size are often not individually measured, and any non enhancing lesion 3 mm or less are usually counted as being silent micro bleeds and more commonly vascular in nature.
They are found on both sides of the cerebral hemisphere...keep in mind T2-hyperintense foci in the cerebral hemispheres are one of the most frequent findings and isn't automatically suggestive of MS, locations, size, shape, enhancing etc all help to point towards the more likely differentials.....
"MRI is a sensitive method of CNS focal lesions detection but is less specific as far as their differentiation is concerned. Particular features of the focal lesions on MR images (number, size, location, presence or lack of edema, reaction to contrast medium, evolution in time), as well as accompanying features (atrophy of particular brain structures, postcontrast enhancement of leptomeninges, coexistence of diffuse lesions, coexistence of spinal lesions) are the significant differentiating elements.
However, they can not be considered in isolation from clinical data and other diagnostic tests results."
"The foci increased in numbers but distribution remains the same." is pointing out that whilst there are more of them than your last MRI, they are still in the exact same areas of the brain which isn't typically suggestive of MS, not unheard of but unusual with demyelinating neurological conditions like MS....
What you've mentioned from your report only goes as far as stating the lesions are in the cerebral hemispheres, not very specific as a locations go but it does specify them to be bias to "juxtacortal" (which may or may not be the correct term to use if unmentioned prior and they are next to or adjacent to the cortex and don't include the subcortical ufibres) and "deep white matter" (deeper subcortical and closer to grey matter).......so to me the radiologist is basically saying in a round about way that they're specifically subcortical.
IF they are all subcortical and 3mm or less non specific lesions, your MRI results are not showing the minimum of what you'd need on your MRI to be suggestive or meet the Mcdonald diagnostic criteria, that doesn't rule out MS as such but that would put MS lower on your list of potential causes.....IF the juxtacortical identification is spot on and correct, you would have 1 consistency with the criteria, and MS would be higher on your list of potential causes, but keep in mind it;s not typical for MS to stay in only one brain location over a number of years, and its also not typical for MS to only cause tiny 1-3 mm lesions (off the top of my head whilst MS does cause smaller lesions too, research pegs MS brain lesions to average in the 7-10mm size range), again that doesn't rule out MS as such but it would also put MS lower on your list of potential causes.
MRI results are only one part of the diagnostic process, do you know if you have any specific abnormal neurological clinical signs, which would of shown up during your neurological assessments?
Hope that helps and doesn't confuse..........JJ
So last year's MRI says
There's are numerous foci increased in the T2 flairs signal in the Deep white matter of the cerebral hemispheres.
Lesions involved perivetricular and subcortical white matter.
Theres is involvement of the corpus callous. There are more than 20 lesions in each hemisphere.
No subtentorial identified
Note this scan was never read by a radiology just the MS doctor that said i see no juxtacortical.
So then last week's MRI was
Finding no evidence of an acute infarct or chronic ie. Orremote infarct major vascular territory or of a lacunar
HOWEVER bilateral cerebral hemispheric white matter multiplied very small discrete foci t2 /flair signals hyperintensity
The foci show a strong predilection for juxtacortical and then goes on just say her disease has progressed.
I'm over here going I didn't even know I had a disease LOL
Something is definitely going on;
IF you've got last years MRI report stating the lesions are located in the "perivetricular and subcortical white matter" and "There is involvement of the corpus callous"...
and this years MRI, even though it doesn't mention any lesions specifically being periventricular and involving the corpus callosum (CC), but is stating the lesions "show a strong predilection for juxtacortical" and juxtacortical is correct...
then your MRI's from last year to this, have significantly changed, despite this years radiologist report not making more specific points of difference and only stating "..distribution remains the same"
....together they identify Periventricular, Juxtacortical and Corpus callosum (CC), which would usually be suggestive/consistent with neurological conditions like MS.
"I know my last MS doctor which like maybe you have it not sure come back in a year get another MRI. He told me one of the reasons he was not going to diagnose Ms yet was because I had juxtacortical that he could see. "
IF your last years neuro wasn't actually saying you 'had 'just cortical' that he could see', it causes confusion and even if non were juxtacortical or even subtentorial on last years MRI, it doesn't make sense why that neuro didn't get more interested in your case IF himself or a radiologist identified CC involvement as well as Periventricular
....to be brutally honest, all verbal commentary you have [which sound more in line with the kind of daft things we hear about from a general neuro's understanding of MS, than what you'd expect from an MS specialising neurologist, who is typically the most up to date with the latest MS research and has a lot more experience diagnosing MS] needs to be completely excluded from the facts....focus 'only' on the diagnostic hard evidence you have, either in a written report or the MRI's them selves if your MRI reports are conflicting in the details.
"There are more than 20 lesions in each hemisphere" 40+ lesions would be a significant number regardless of type, even 40+ small ischemic white matter lesions (chronic white matter disease) isn't within normal expectations for any age group, and the younger you are under 65yrs the more abnormal it would be and the more it would indicate a 'disease' of some kind was behind their continual development.
Lesion type, size, shape and their locations along with your age, medical history, symptom type and pattern narrow down the list of potential causes, unfortunately it's not unusual for it to take many years for the diagnostic evidence to mount and make the condition clear....
You said "I have nothing neurological wrong" but if your neurologist assessment identified your reflexes as 3+ and it wasn't symmetrical, then you do have something neurologically clinically abnormal, see below;
"Reflexes are graded using a 0 to 4+ scale:
3+ hyperactive without clonus
4+ hyperactive with clonus
Some studies indicate that up to 10% of people with no nervous system disease may have absence of one or more of the deep tendon reflexes. In general however, deep tendon reflexes are rarely absent in normal persons if the technique of eliciting them is adequate. Note that the reflex response depends on the force of the stimulus. Reflexes should be symmetrical.
some individuals especially young anxious people may have brisk reflexes which are not necessarily pathological. There should be no asymmetry.
usually clonus is abnormal although a few beats of non-sustained transient clonus may occasionally be seen.
abdominal reflexes are usually obtainable in healthy non-obese individuals. They may be absent in obese individuals or those with lax abdominal musculature. Local diminishment or absence, suggests a disturbance in the continuity of the reflex arc (afferent nerve, motor center, efferent nerve). Loss, when associated with exaggeration of deep tendon reflexes implies a pyramidal tract lesion." http://neuroexam.med.utoronto.ca/motor_6.htm
Again being brutally honest, IF it was a neurological condition like MS, you wouldn't have enough clinically abnormal going on for someone with 40+ MS lesions.
The lack of multiple neurological clinical signs is probably one of the biggest red flags pointing away from neurological conditions like MS, simply because of the way MS lesions damage shows up clinically.
You don't say exactly what showed up in your visual exam or whether you had further tests ie OCT or VEP etc by an ophthalmologist to identify optic nerve damage or nystagmus etc, so that might be another question mark on what is specifically abnormal, the health of your eyes alone would be highly relevant in your diagnostic make up and could potentially identify one of the MS mimics or put MS at the very top of your list of likely causes when all the evidence is combined....
There are a lot of conditions that cause the same or similar symptoms as MS, some even have a similar pattern of relapsing and remitting and with your symptoms for years being predominantly headache related, with periods of vertigo it could even be adding up more towards Migraine and all its associated medical conditions.....having a high number of tiny to small subcortical lesions without neurological damage is highly associated with Migraines, the key will be exactly where your MRI's are saying they are!
I would think getting further visual test evidence and getting your vertigo type diagnosed is probably a very good idea, either test evidence would narrow the cause down considerably so definitely worth considering imho
Hope that helps....JJ
When i asked if you know if you have any specific abnormal neurological clinical signs, which would of shown up during your neurological assessments..You said "I have nothing neurological wrong" but later mentioned you have "brisk reflexes + 3"
IF your neurological clinical assessments are normal ie no abnormal clinical signs showing up physically in your body during your neurological clinical exams and or the 'only' clinical sign that did show up are 3+ brisk reflexes that is symmetrical, the same both sides of the body...
...a lack of corresponding abnormal clinical signs would generally point away from neurological conditions like MS being the cause of the patients 'symptoms'.
"no, I have a lot of neurological problems like spasms hot feeling in my body sore joints memory loss all that..."
this would be your symptoms, symptoms are not the same thing as the measurable abnormal 'clinical signs' which are suggestive/consistent with neurological causation eg positive Babinksi, Ataxic gait, Clonus, Nystagmus, unilateral hyperreflexia, etc etc etc
"What I was talking about neurological like something stressful in your life made it happen"
this would be 'psychological', there are a lot of mental health conditions that can definitely cause 'similar' symptoms to neurological conditions but neurological Tremor types are measurably different than a psychological Tremor causation;
"Intention tremor — generally is greatest during physical movement; there is no shaking when a person is at rest. The tremor develops and becomes more pronounced as the person tries to grasp or reach for something, or move a hand or foot to a precise spot. This is the most common and generally most disabling form of tremor that occurs in people with MS.
Postural tremor — generally is greatest when a limb or the whole body is being supported against gravity. For example, a person who has a postural tremor will shake while sitting or standing, but not while lying down.
Resting tremor — generally is greatest when the body part is at rest and is diminished with movement. More typical of Parkinson's disease than MS.
Nystagmus — produces jumpy eye movements."
Whilst it's 100% correct that every MSer is unique, keep in mind that demyelinating brain and or spinal cord lesions can't all be clinically silent....basically with the way the disease process of MS works, over time there will always be some lesions that cause CNS damage and leave behind a corresponding abnormal neurological clinical sign.
Neurological condition like MS left untreated, without disease modifying drugs (DMD's) to change/slow down the natural progressive course of demyelinating diseases, is typically expected over decades to have accumulated some levels of measurable neurological damage...the same as what normally use to happened to people with RRMS prior to the development of DMD's, and what still happen's today with people with PPMS.
"I knew 48 years old was way too young to have 40 lesions, especially when MS runs in your family"....definitely isn't normal but brain lesions are associated with many different types of medical conditions, MS is just one of the many differentials.
Having a family history of MS, honestly doesn't mean the 40+ lesions you have could only be caused by a neurological condition like MS...as frustrating as diagnostic limbo is, ruling in-out all the medical conditions that fits your medical history, symptom type and symptoms pattern, abnormal-normal clinical signs and your entire diagnostic evidence to date, is all part of the diagnostic process and can take years to work out when ever the hard evidence is untypical and or completely out side the box of disease norms.
I'll keep my fingers crossed that when you see your neurologist in a couple more weeks, you'll get clarification on what's going on, or at least further testing to help narrow down your list of possible causes, please let me know what happens.
Hope that helps......JJ
Oh I got you, yeah that's one reason it's been hard for me to get diagnose is I'm horrible at explaining things.
But yeah two years ago when I got sent to a neurologist it was because my doctor thought I had Parkinson's disease because I had tremors.
And yeah it does come at rest or like when they do the arm thing where I have to rest my arm in their hand and they move it down I have a tremor. I will surely come back and let you know what she says on the 31st after my last MRI.
I've never focused on my trimmers it's always been the pain in my muscles and the buzzing in my nerves drive me crazy.