MRI results

[Crazylady1976]

I'm trying to figure out if my neurologist is avoiding my questions or just isn't the best doctor out there and I need to start a search for a new one. He ordered a brain MRI w/ contrast yet when I went I my next visit he said he didn't know what to make of the results. If it is MS then I would think I needed to start on medicines to slow the process down or if it's not I would need to find out the problem and correct it.

Results:

There is extensive periventricular and deep white matter T2 & FLAIR signal hyper intensity in a pericallosal and subcortical distribution.

That's the only thing I can't make heads or tails of. The rest in normal or unremarkable. So any hell anyone can give me is helpful.

[doublevision1]

Does the MS specialist know about your request to increase your Neurontin due to the sensory symptom in your finger? If not, you should inform him. You could take the opportunity to mention the other points you forgot to address at your appointment.

[Crazylady1976]

I've completed my visit to the MS specialist. He stated that my lesions weren't from migraines. There are way too many and they are too big for that to be possible. Some appear to be the size of a nickle and some are going up and down from the top of my brain toward the bottom (not sure what that implies) He said if I had another episode he would lean to me having MS. There was a few strange things I didn't think to tell him about that I only remember a few days after the visit, still unsure if those would be something ms would cause. He gave me shots in the back of my head for the headaches but sadly they had no affect at all. I spent most of the week last week in bed due to the headaches not relenting.

Last week I had to make a call to my regular neuro to ask if my neurotin would be increased because it kept feeling like my ring finger on my left hand was being stuck in a light socket with every movement or touch. He stated that it's because of my neck, yet I've saw 3 different Drs about my neck and they say it's fine.  

So, what should I do now? Or is just a wait and see game now?

[Crazylady1976]

I've thought the same thing about the headaches being caused by my neck. Also makes me think that may be why I don't respond to any of the medicines which help prevent or stop a migraine. I've seen 2 spine specialists about my neck and they both say even tho I have a few disc herniations and severe spinal stenosis it's not causing any of the problems or the headaches. If it wasn't for the lesions I'd think one of the herniations was just irritating a nerve causing the neurological symptoms. The tingling/burning, drunkenness happens without a headache at times so again that could lead back to irritation on a nerve that just progresses until it sets off a headache I'd think. But again that's just my opinion and considering it's my body the Drs don't count what I think lol

I've not had any sort of nerve tests that I remember. Only MRIs and the spinal tap. Most of the Drs around my area only do common colds. My neurologist is over a hour away and is 1 of the only 2 that we have within that driving distance. Any other doctor usually requires a 3 hour drive but they all require a referral. My primary drs office called me this morning and said he will refer me to a MS Clinic and let them see what they think. So with any luck they can point me in the right direction (keeping my fingers crossed at least)

Thank you all so much for the information. It has helped me immensely being able to toss ideas back and forth with people who know much more about MS than I do. With what little the MRI report shows I'm not even sure if the lesions are consistent with MS or something else. (I'm not sure the radiologists are very competent either considering another Dr has said to me He doesn't think they know what they are doing)

[supermum_ms]

Hmmm it doesn't sound like migraine is the only thing you've got going on, though i do know that some Migraines episodes are so bad they can cause similar symptoms or even mimic MS, although Migraines don't produce the abnormal clinical and other suggestive test evidence.

You mentioned your MRI's over time are finding even more lesions, there are other conditions that cause lesions but in regards to if Migraines could be the more likely explanation or not, the 'location' of your lesions is probably one of the most important clues. I think it might be informative to look at each of your MRI reports and take note of where exactly these lesions are developing.

The reason I asked about your clinical exam results, is because if your don't have any clinically abnormal neurological signs eg clonus, hyper-reflexia, positive Babinski etc etc neurological conditions like MS would be quite unlikely. Neurological conditions like MS though, do cause abnormal clinical signs of lesion damage and generally if your clinical exams are normal it's unlikely that your symptoms could be caused by lesion damage ie MS.  

Have you had any nerve conductor tests to see if there is any peripheral nerve damage going on? If there is, that would point more towards something peripheral nerve related happening, rather than central nervous system (MS), possibly spinal related and it would explain your continual bilateral upper body symptoms.

I did get the impression from your Migraine description, that it all originates from the same location in your neck and travels upwards and that's when the rest happens, it's similar sounding to migraine but it seems odd for migraines to start in the neck. It makes me wonder if the head pain etc, could be the end result of something that actually originates in your spine......it might be worth getting the opinion of a spinal specialist, or at least looking at the spinal MRI's to see if anything was noted and may be more pronounced over the time frame of each.

Keep in mind that MS does have many mimics, symptoms are similar or overlap with too many other conditions, symptoms are not a particularly good indicator for MS, it's your clinically abnormal signs, lesion location, size, enhancement etc that puts MS higher on the list than any of the other potential causes.

Cheers.........JJ  

[Crazylady1976]

Your so very correct about this being like a nightmare. I've just started seeing this neuro last year. The one I previously saw I went around with for about 5 yrs with things only getting worse and him doing nothing. I get this one is just trying to be cautious but I thought the same thing about being more aggressive. At this point any thing would be better than nothing.

I've had all sorts of MRIs.... neck, brain, back. All of the brain ones showing worsening of lesions. The first neuro just kept saying it was because of my headaches.

[jenphilly]

I am sorry to hear your neurologist is not helping to come up with definite answers.  How long have you been seeing the same neuro?   Have you had a cervical or thoracic spine MRI?   The spinal tap being negative does not rule out MS, as my doctor explained, a spinal tap is just one test to rule in MS, but a negative does not rule out MS (hopefully that makes sense).  

With your family history, I am a bit surprised they are not being more aggressive with testing and trying to reach a diagnosis.  Do you have the option of seeking an MS specialist, even if its not definitely MS, you at least need more active / aggressive testing to come up with some answers.  

Sorry you're having a nightmare...  I know my diagnosis was about 8 months and it was more ruling out diseases for half the time!  

[Crazylady1976]

Super mum,
I have been having the lesions show up on my MRIs for the last several years and I've recently started having physical issues that are getting worse. Also on the MRI report it states: Heavy burden of white matte plaque.

My arms, hands and fingers will go numb. Not to the point I don't kno where they are but to the point I have problems holding onto things and writing. I can forget about opening a jar or a canned/bottle soft drink.

I do have migraines (or so they tell me and for years all lesions were explained by that)  all I can explain to them about the headaches is my neck (they say it's not due to my neck) will hurt then it will work it's way up my head and make one side of my head pound and eye throb as if it's being stabbed with an ice pick.  During the headache I feel kinda numb and tingly all over and my eyesight will be so blurry I wonder if I have my contacts in. After a headache I barely move around a few days afterwards because I'm just so tired. Some of these headaches will last for a few days. I've quit going to the ER or my primary Drs office because everyone thinks your drug seeking. I personally dislike pain pills they always make me sick and I already feel bad enough without that. (I still have several lortabs out of 30 that were prescribed back in Novemeber if that says anything)

I've tripped and fell on a few occasions once I recieved a broken jaw (the worst fall) and then I got off lucky and only a black eye on another occasion.  Not counting all the bumps and bruises. Normally when I do my stumbling routine I simply just tell everyone I felt like a quick game of hopscotch.

There's probably more things but I can't remember them. I do struggle with remembering things sometimes and that is not me at all. I've always been a multitasker. I could easily repeat conversations I was listening too while typing up reports at work. Now I do good to get a report typed some days because I can't find the words I'm looking for or concentrate to make things coherent.  

I haven't told him but, or anyone for that matter but I got lost in town once about 2-3 years ago. I had no idea where I was or where I was going. I'm also starting to have anxiety attacks, some for no reason at all in my opinion.

The neurologist knows about all of these details and has seen me a few times when I have one of my "staggering" spells. I just don't kno if I my neuro is dismissing things or just wants more evidence or if I need to explore other doctors.

Ohhh... My spinal tap was negative as was all the other blood work.

Even if it's not MS I'd like to know so some sort of preventive medicines could be started. Considering my mother has MS and my father had dementia i would think treatment of some sort would need to be started ASAP.

I currently take neurotin for the burning pain and numbness. It seems to help emensely.

[supermum_ms]

Hi and welcome to our little MS community,

As Alex mentioned MS can take a long time to diagnose, MRI's don't always find the more obvious signs of demyenation, which makes it can make it more difficult ot work out which condition is responsible for the lesions, MS is just one of many, so its generally your collective test evidence and not just the MRI that puts MS at the top of the list of possible causes.

Do you know if you had any clinically abnormal neurological signs, found during your neurological exam?

Cheers..........JJ

[HVAC]

Neurologists like to follow you over time. I have had a dozen over the years. The way MS works is they rule out every other possibility. No test rules MS in or out. It is your history, symptoms, neurological exams, MRIs, evoked potential, and Lumbar punctures and blood work to rule out all other diseases which act like MS. Most doctors follow you every three to six months.

My diagnosis took two years even though my MRI showed MS, my evoked potential showed MS, all my blood work was negative, my neurological exam showed MS, had many symptoms, and finally a positive lumbar puncture. They want to comapre your symptoms over time.

Alex