Well, I keep telling myself I don't have MS, because I only have one lesion and I had the best MRI machine, with contrast, MS protocol, negative LP. However, I have been having a relapse of my symptoms and made an appt. with John's Hopkins neuro to see if they could figure this thing out! I had to pick up my MRI reports to take to Baltimore and of course I read them.
The first one, in Dec. 06 says "very small area of abnormal signal intensity in the body of the corpus callosum" This is non-enhancing and only seen in one view. The next MRI was 11/07 and said same small lesion, non-enhancing in the body of the corpus callosum and it's not seen on any other views. It goes on to say there are no othe abnormalities in the areas of Dawson's Fingers and the rest of the brain and spinal cord. Recommend surveillance.
So, I'm still in pain, feel tingling/prickling in heat (can't even enjoy a hot bath) and I have these results. ALSO the MRI is a 1.5 Tesla - I thought it was stronger than that! What does that mean for my results, if anything? I'm so tired of taking antivirals, Baclofen, Neurontin, Pamelor and Cymbalta. I don't think they are doing anything anymore. Can anyone relate? I mean, I was convinced that I didn't have MS, but there is always that question, especially with reading these results and that the magnet is just 1.5 Tesla.
The 1.5T is good to look at the brain. However, in my opinion, not so good for the spine. There are too many working parts near/in the spine. The good news is that your lesion hasn't seem to have changed much since the start of this. That's why they are recommending surveillance. Did the radiologist give the exact size of the lesion (mm)? If your last MRI was done in 2007, I would hope that they would repeat it, since you are having symptoms again.
I can relate to what you are feeling. MS was the furtherest thing from my mind at the beginning. But the more times I experienced symptoms, I knew, something was at work. I just don't know what that is yet. To me, any lesion, should be looked at and explained, especially when you are having symptoms. I hope you do get some answers and I hope the doctors do watch over you.
I have no real advice but I can relate a little. I only have one "questionable" lesion and no one seems to want to tell me what it is, or if it's anything at all. As my neuro put it, it could be a number of things.
I'm having another "episode" right now and it's frustrating to say the least because I have absolutely no idea what's going on with my body. I'm sure someone else here will know more about your MRI results. Good luck
Since the corpus callosum is where the left and right hemispheres of the brain communicate with each other (the only place to my knowledge), I would say that one lesion there could affect a great many things!
Thank you guys for your posts. I am in pain today with burning in my feet up to my thighs and my joints ache. This is 2 years + and no answers. I hope the 1.5 Tesla is enough, but it couldn't hurt to use a better MRI machine. Anyway, thank you again for replying. Knowing that others can relate is the most important gift I get from this site. Nobody understands unless they've been in your shoes. I will try to keep you posted.
You say you only have one lesion, but you have alot of symptoms. IF you have one lesion with no symptoms, I could understand a doctor taking a wait and see approach. But how does he explain the lesion AND the symptoms?
My first MRI's many years ago, were done on a 1.5T. It showed lesions in the brain clearly and a lesion in the spine. I DO believe if they are big enough, a 1.5T IS sufficient to see them. Mico-lesions? Maybe not. I always believe there can be mico-lesions that cannot be seen on 1.5T. You can have a HUGE lesion in your brain and have no symptoms whatsoever. You can have a very small lesion and depending on it's location, it can cause a world of symptoms. That's the way the brain works. Just like real estate, it's location, location, location.
It's a known fact that a person can have a dozen lesions in the brain and never have any symptoms. These lesions are not found until the die and an autopsy is performed. Again, it's the location.
I agree with Richard's post about the area of communication, but the area of percise area of communication may be different from one individual to another. Alot of your symptoms are suggestive of spinal involvement. And spinal lesions MAY be difficult to see on a 1.5T MRI. Unless the are large. As in Quix's case. They didn't show up on a 1.5T.
If you can have your MRI's repeated on a 3T or more, of the brain and spinal, with and without contrast dye, that may yeild more answers to explain why you are having so many symptoms.
I hope that you can have that all important MRI done, so you can finally get some answers. Your original MRI is stating that you currently seen lesion needs to be followed up and watched.
Hope I haven't confused you....Keep us updated, will you?
What slightlybroken says is what I recall being Quix's most recent verdict: 1.5 T machines are great and often enough for diagnostic purposes. But, in some cases and esp. the spine, the 3 T can show more.
Did you have your appt. at Hopkins yet, or is that coming up?
I completely agree, that nobody understand 'til they've been there.
My joints have started to ache a lot lately, too. It was a bit of a curve ball the past several days how much the cooler air seemed to affect this in me. A couple of times I woke up cold in bed and could hardly bend my fingers. I'm totally confused!
I am glad you have your own copies of reports. I never thought that would be necessary, but it totally is. I've shared this before on the forum, but I think it's worth repeating:
My 1st neuro ordered a brain MRI with and w.o. contrast, done weeks apart. The report for the scan with contrast referenced the report w.o. contrast. That is, the 2nd report was not a stand-alone report! Well, my 1st neuro decided to tell me that my brain MRI was normal, and he only send the 2nd report back to my physician, and I only took that 2nd report to my 2nd neuro. Finally, many months later, I went to the MRI center and got a CD of the scans and copies of the reports. Turns out that my 1st brain MRI, without contrast, was NOT normal. It turns out I have 7-8 lesions, some of which are not small, scattered throughout the cerebral white matter of both frontal lobes. I was 28 at the time of the scan.
But again, my 1st neuro told me my scan was normal, and never sent that report back to my PCP, he only sent the follow up report that noted "no abnormal enhancement." I had a 2nd neuro dismiss me because I TOLD him my MRI was normal, because I was told that it was!
My 3rd neuro did not agree at all, and said the lesions were concerning for demyelinating (sp?) diseases. He was going to diagnose me if either my MRI changed or if my LP was positive. A repeat MRI showed no changes, and my LP was clear, so I still don't know what is wrong with me. But had I not gotten my own copy of that report, I'd probably be blaming this whole situation on myself.
So keep your own copies, and keep looking for answers!
I also recently got all copies of all of the chart notes from everyone I've seen. I would also suggest this. It is amazing to read what they write down compared to what you tell them! The main reason I keep seeking help is that I am not able to concentrate properly at my work, and I have stated that time and time again, but none of them (neuros or my PCP) ever wrote down that complaint! In the past I never thought bringing a written list of issues was necessary for me, but I think I am now convinced. I'm going to prepare some sort of write-up for next time.
OK, I kinda hi-jacked your thread here, my bad! But again, glad you got those reports, keep getting them, and any and all other records, and GOOD LUCK!
I am really confused about how neuro's dx people with ms, and how so many of us get told different things..........
I have had 3 clear mri's so far, and when I have the mri, I wait and take the scan and the report with me to the neuro, he looks at it, then I take it home with me to keep.
I I have had a negative L.P. also, but my neuro in sure what I have is due to ms.
I am going for repeat mri's on a 3 telsa early Jan next year, and my neuro told me even if just one lesions appears on brain or spine mri he will give me the ms diagnosis and start me on treatment straight away.
Even if 1 lesion appears on my next mri, I don't know if I should start the meds, how can they be sure it is or isn't ms really, makes me wonder where some of these neuros go to school.............
Too many of them seem to say different things, I spoke to a neuro only a few months ago from Boston and he told me with a negative L.P. and normal mri's I can rule ms out 100% Who on earth do we listen too??????????? This whole thing is just too confusing to me
Thank you for your replies! It is very important that I keep my own patient file. I have given Neuro 2 a list of my timeline starting with first day of symptoms and he handed it back to me and said he just wanted me to tell him. Why would he do that! ? If we do have memory issues from MS or something else neurological, we have to write things down! Aargh. Why wouldn't he want that copy in my file?? It is in black and white and I spent hours typing it up nicely. As far as starting the meds, I think I would go to an MS specialist first. It is a diagnosis of exclusion, so it's hard to make the diag. when there are so many things that mimic (I suppose this is the neuros explanation). We all want answers and then when we get them we may not be convinced. I dread that too Doc72.
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