Hi everyone! I hope 'some' people remember me here. :-) (past "Nickiesworld" - having problems with old account so I just made a new one) On medhelp, in the past, I discussed my MRI's and the bad experiences I've had in the last 23 years with doctors and being ill. This is gonna be a long one, and I apologize ahead of time, but I really need some advice here, because I'm about to throw in the towel and give up on doctors completely.
Again, below are my past brain MRI's - leaving out some unimportant notes to get to the point :
3/18/03: MRI examination of the brain reveals tiny non-specific area of white matter hyperintensity on Image 21 on the FLAIR axial images in the left frontal region. There are some prominent Virchow-Robin spaces in the parietal regions bilaterally which follow CSF intensity being dark on the FLAIR and T1-weighted sequences but bright on the T2-weighted sequences.
1/28/08: Multiplanar MRI examination of the brain was performed. Examination is compared with prior study from 3/18/03. There are tiny subcortical foci of increased white matter signal intensity in the superior right and left frontal regions, new from old exam. There are a few tiny foci more inferiorly within frontal lobes most notable adjacent to the frontal horns of the lateral ventricles. These foci are present on prior exam and are not new.
There is a small focus of increased white matter signal intensity adjacent to the atrium of the left lateral ventricle, in retrospect present on the old exam. There are no enhancing acute demyelinating foci. There is no abnormal intraparenchymal or meningeal/dural enhancement. Scattered Virchow-Robin spaces again noted.
Impression: No enhancing acute demyelinating foci. There are a few scattered tiny white matter foci of increased signal intensity on FLAIR and T2-weighted sequences mainly stable from 2003. Interval development of 2 nonacute nonenhancing white matter foci are seen in the frontal lobe regions.
11/20/09 (I am now 37 yrs old and this is a different hospital and radiologist.): There are numerous small white matter lesions scattered within the supratentorial brain parenchyma. These are all less than 5mm without mass effect or abnormal enhancing. There is no abnormal diffusion signal. These white matter lesions are peripherally located in the juxtacortical white matter.
Impression: There are numerous white matter lesions scattered within the supratentorial brain parenchyma, predominately in the juxtacortical white matter with no mass effect or abnormal enhancement. These are nonspecific and differential considerations for a patient this age would include sequela of chronic infectious or inflammatory process, collagen vascular diseases or less likely demyelinating disease. Followup examination in 3 to 6 months would confirm the stability of these lesions. Neurologic consultation recommended.
The new radiologist in 2009 possibly missed or forgot to check my frontal lobes. I had to bring in my past 2008 CD for him to compare, so this is what he added: Previous outside examination from January 28, 2008 is now presented for comparison.
Comparing axial FLAIR and T2-weighted imaging, the small white matter lesions seen predominately within the frontal lobes are not significantly changed. Overall there does not appear to be any significant change compared to the previous examination. Once again, these numerous white matter lesions are nonspecific in appearance with an unchanged differential diagnosis from this original report. If there is concern for demyelinating disease, additional imagining of the spine may provide additional information.
The Neuro ordered a C-spine and Thoracic spine MRI. No lesions were found, but I do have degenerative disk disease which I knew I had since I was 24. I get a Probable MS diagnosis from the Neuro, who didn't find MS in the LP from 2008, and all my evoked potentials from 2009 are fine. No mention of an appt in the future. I leave, not happy, in an obvious flare-up, and could barely keep my eyes open from the horrible fatigue.
So I called the MS Society who emailed me a list of Neurologists and MS Specialists. Stupid me made an appt with a Neuro who I thought was an MS Specialist. I never thought to ask when I made the appt. I took my list of symptoms and read them to him. He nods and gives me a "You're crazy" look. He basically said that my flare-up symptoms are my every day symptoms. He obviously didn't LISTEN, because I didn't say that! He skims over my paper results then SKIMS over my latest MRI images in front of me, missing 100's of images! Then he gives me the neurological exam, but never took his safety pin to my numb patch on my right leg, but pokes me EVERY WHERE ELSE, and made me suffer in pain, including each side of the front of my neck!
Below are his comments in quotes:
"Yes, you have some white spots. They are very small and are most likely migraine related." (I said I have migraines about twice a month, and daily muscular headaches that involve muscle pain and tension in my neck as well, and it's been happening since I was 14 yrs old.)
"MS lesions are only located by, around, or touching the ventricles." (something along those lines)
"MS lesions are normally very large. Yours are very small and scattered."
"On MRI's, MS lesions will usually be enhanced, especially during a flare-up."
"If you had a lesion on your c-spine, I'd say that you'd have MS."
"If you came to me and said that you went blind in one eye or both eyes, or you were numb from waste down for several weeks with incontinence, that would definitely suspect me of MS, and you'd probably get diagnosed."
"MS symptoms are very similar to depression. Your symptoms may only be depression that's also causing your headaches, and headaches cause lesions, especially since you've had them every day for over 20 years." (I had much to say about this comment, especially due to the pins and needles and numbness in my legs, hands and fingers, and that fact that I couldn't walk for 3 weeks due to severe muscle problems back in 1998. He said that depression can cause all of it! At this point, I wanted to nail him!)
He ordered another LP, a whole bunch of blood work, wrote me a prescription for Topamax, referred me to the University of Pennsylvania Hospital, and said to see an MS Specialist there. He said that I need to see an MS Specialists who sleeps MS, eats MS, you get the point. Another LP? Ugh! He said that my protein levels could change over the years, especially during a flare-up, but I had a flare-up the last time I got an LP done in 2008, and it showed nothing.
On the other hand, my family doctor who saw the test results said that it's definitely MS. "Oh, so many lesions. Ooh, so many lesions!" as she nods her head in sadness. Why must people talk to me this way?? And she can't even treat me anyway! Topamax? No! I went to the Topamax site and read the "Take the Migraine Symptom Quiz", and I get 1 out of 6 right for migraines. I don't even fit the description, and that's what the Neuro thinks is the problem!
So, after 23 years of all this pain and getting worse, do I really have to become numb from waste down to get diagnosed and treated? To become blind? To get THAT BAD? Because I've been sick for all these years, this Neuro said that I would've been diagnosed by now, but I never had an MRI until I was 30, and nobody ever suspected MS or brought it up to me! I wanna say, "Hello, can anyone hear me?!" And then I have people on other MS forums and even here who've said that I should have been diagnosed and treated by now. Thoughts, suggestions?
Happy New Year, all, and thank you for listening to me vent, if you got this far! ((hugs))
Well, time for some tough talk. We've all been through this discussion of what an idiot your neuro is. We talked about the juxtacortical lesion thing. He doesn't know his head from a hole in the ground.
Now he says that MS lesions are limited to the periventricular region. Clearly what he knows about MS and MRIs would not fill a thimble after you added the shot of Drambuie. MS commonly causes lesions in the periventricular & subcortical - specifically in the juxtacortical regions, the corpus callosum, the cerebellum, the brainstem, optic tracts, corticaospinal tracts, the gray matter - both cortical and deep, and, of course, the spinal cord. So, your neuro appears to be very stupid and/or completely uneducated and uneducable. At worst he knows he is wrong, but is lying to you because, for some reason, he is determined that YOU do not have MS. I think my first neuro was like this. He just didn't like me.
As for whether the lesions need to be very large. The most accepted criterion is greater than 2mm in size. This is still pretty tiny. This guy really IS stupid.
Enhancing?? The truth is that finding an enhancing lesion isn't THAT common. Many people with confirmed MS go through the course of their disease without ever catching an enhancing lesion. When you find one it is great evidence, but the lack of one says nothing about whether this is or is not MS.
We also know that the vast majority of people with migraine disease do not end up with diffuse neurological deficit.
I understand the frustration and the lingering anger at wasting time with a "specialist" that is stupid. This anger will not likely go away, but the way you deal with it will be the answer to what happens.
One thing is to realize that he is and idiot and allow yourself to be defeated by it. We have people here who have given up and resigned themselves to living with a disease that is never named. This is one's choice, but can work against you in terms of the way you are treated by subsequent doctors, sometimes by the support you can get from your family and current PCP, and in whether or not you can get appropriate disability - should it ever come to that.
This is where I believe you need to cast away the idiot and "doctor shop" until you find someone who knows something that is true. I am not saying that you look until you get a diagnosis of MS, because I don't know for sure that this is what you have. But, at least get into the hands of a doctor that is educated on the topic. I probably sound like a broken record when I insist that we find doctors that LISTEN to us without bias, that LOOK at us and do a skilled neuro exam and a rational work up. Then - and this is ever bit as important as the first two things - we need to find a neurologist that can actually put all of the information ACCURATELY together and THINK.
You may need a rest from the whole process. Many have taken such a break. I swore off doctors the last time my first, evil neuro documented increased spasticity and went no-where with it. When he all but mocked me about whether I "wanted" him to do an LP. This lasted until one night I suddenly lost the use of my right arm. Seven months later I found the kind of doctor I needed and he made the diagnosis my first visit - barely hiding his contempt for the hands I had been in before.
The reality is that the good doctors ARE out there. Otherwise, we would not recommend that you keep looking. I found one. He was smart and intense, but had the personality of a saucer of cold pee.
People here will tell you that persistence has paid off. Monotreme went through at least 8 neurologists and finally found a treasure. Others have gone through several before finding someone who could/would really put their cases together.
Final word, the more I hear about what this neuro has told you, the more it is clear that he really is a maroon.
The ball is in your court. I say put your anger and frustration aside and keep going.
Here is the Pennsylvania page from msneuroratings.com. You can read them and see if there are any that have really good ratings. Also, we have a lot of members in PA. Maybe some of them have found one that they respect.
After 23 years, I see why you are despairing of finding a doctor that knows something. But, it hurts to see that "this" guy - who is as defective as we have ever seen - is the one who makes you stop looking.
Another thing you could do is have a good neuroradiologist at an MS center give your MRIs a second opinion. A lot of people don't know that you can do this. Kathy (Fluffysmom) did this and it was one of the turning points for her getting a diagnosis.
Aw, Quix! I sure hope this happens for me. Deep down, I don't wanna give up. I'm just so dang tired of doctors thinking I'm crazy or giving me that look as if I am. The sad part about all this? You mentioned a 2nd opinion. Guess what? He was the 2nd opinion, and just as much an idiot as the other Neuro.
I also forgot that I have a whole bunch of paperwork to fill out that was sent to me by an MS Center that's 25 mins from me. I made an appt and forgot about it and it's at the end of February. I'm supposed to mail my MRI results and the paperwork (er, like yesterday!), and bring in all my CD's the day of the appt. I can't believe I forgot! Er, okay, yes I can!
I just don't understand why I would need another LP, when the lesions should be enough. He actually said that nothing has changed since 2008. Like, hello? "Numerous lesions in the juxtacortical" since 2008!! That's uh, a big change, in my opinion! What's that? 3 areas of my brain now?!
McDonald Criteria? I mentioned it, and all he talked about were the symptoms, when the McDonald Criteria mainly talks about the lesions. Correct me if I'm wrong. I do have it pulled up as I'm typing this in another browser window, and although it also talks about the LP and evoked potentials, my MRI's show that I'm progressing, and my Neurological symptoms are obvious.
Oh, no, no, no. Let's not forget the one when I was 14 who ordered an EEG on me, and when it came back abnormal, he said not to worry, because most people's EEG's come back abnormal. Uh, why do an EEG on me then, right?
I poop you not! LOL! I'm in the process of trying to get this test result and I'm having a REALLY hard time because it goes back 23 years! "Oh, we only save files for 7 years." Uh, huh.
Oh, man. The stories I could tell!
Welp, Happy New Year once again! This "crazy" woman is off to bed! Thanks for lifting my spirits! :)
I just wanted to say that I sympathize with your situation. It's a heck of a place to be. I'm in the same boat...S.S. LIMBO, with your non friendly, moron neuro as the captain. I've just wanted to jump ship sometimes and forget the whole issue. But pretending that your health issues will stay quiet is another thing. They are a constant reminder that something IS wrong, and you NEED to find the right doctor who will diagnose you. There has to be someone out there that can do the job and has the intelligence to know the name of our diseases...I haven't lost faith completely.
It seems that I've been somewhat of an attractant for bad neuros (it must be my perfume). My 1st neuro, without laying a finger on me, said that nothing was wrong with me and I should just go home. My 2nd neuro thought it could be MS, but kept sending me to an open MRI (0.7T strength). When the evidence wasn't showing on the test, he gave up. My 3rd neuro was a student and her teacher. They said that even though my neuro exam was abnormal, I didn't have enough evidence of anything (bigger lesions on MRI, positive LP, etc.) so I must be suffering from stress.
I'm currently on my 4th neuro. She's nice and does seem like she wants to help. I can at least say that. The only problem is, she won't diagnose me unless a MS specialist does. I did go to a specialist and all they want to do is "watch and wait" and treat my symptoms...Frankly, I'm sick of this approach. I want the name of whatever is doing this to me. I guess you could say in one since, I feel IF I had a name, I could have some of my power back because right now, I have no clue WHAT this thing is, WHAT it will do, and WHAT it will take from me. I already know some of the things it is capable of, and I don't like it!
Please follow Quix's advice. Your second opinion was an uneducated moron, disguised as a neuro. He might have gotten he's degree from a cereal box. Don't let his opinion cause you to stop looking. You know your body better than anyone else. Listen to it, and not them.
I just wanted you to know it will be OK...and I know how you feel. Don't give up! Hang in there.
When I read your story, I thought it almost mirrored mine. I am currently on neuro #4 and looking for #5.
Neuro #1 said my 5 lesions were from migraines (I'd only had 2 at that point......one as a teen & then one in early 30's......the last I thought was a stroke and got an MRI.)
Neuro #2 8 years later said all my neuro issues were essential tremor & migraines together. Then when I got ON he said I had MS, then took the MS dx away when my LP was negative even though I now had 20+ brain lesions.
Neuro #3 (my 2nd opinion when I was told I had MS) said I had definite MS & started me on meds.
He left his pracitice & I ended up with neuro #4 who now says I have possible MS because my last MRI was unchanged. Hello.......I thought MS meds were supposed to help you stay stable? That we would have to wait and see what was wrong with me and that if no flairs in 5 years, then no MS. So I'm supposed to go 5 years feeling like cr@p with no help anymore. I don't think so.
So now I am on the lookout for neuro #5.
Anyway, I just wanted you to know that you are not alone and I hope your find an understanding neuro soon.
I have had to change states twice since my original DX 11 years ago. I usually plan on going through at least 2 to 3 neurologists every move. I can ask for suggestions and advice from others in the area with MS for a good Neuro but I still have to find one that I am compatible with.
It is important to me that we are on the same page as far as what I expect out of my treatment.
Not all Neuros are willing to listen and willing to be open to new ideas and no one knows my body as well as I do. My doctor derives her knowledge from training not from actually experiencing MS. And she has hundreds of other patients to care for, she is a wonderful doctor but she doesn't have time to research my case individually, so I do that for myself and I stay updated and I assume responsibility for my own health care. I appreciate the fact that she is open to hearing what I feel is best for me. She knows the medical answers but I know my body and I know what is working for me and what isn't. If a doctor does not feel right or isn't working for me then I find another one. Not always an easy task but I have beaten so many odds that I believe it has been well worth the effort.
Had I blindly listened to what the first Neuro told me, I would not be walking today. He was content to leave me paralyzed because to quote him "I am sorry but there is no cure for MS and it is a progressive disorder, you will only progress from here" I found doctors who would listen to ME and now I could easily out run that old goat in a foot race.
You should NEVER trust a health care professional that you have misgivings about. If you have any doubt, find another doctor, your health is the most important thing you own. If it takes you changing doctors over and over then do it. Eventually you will find the one you trust.
Qtemoon - Wow! great advice! and Welcome to the forum!
Nickie - I have some "not so great" info. In my research for the CIS article I just wrote, I came acros a little discussion of the importance of juxtacortical lesion. This was from a discussion of findings and symptoms that the experts considered Major, Moderate and Minor "RED FLAGS". The major red flags wer ones that everyone agreed meant you should look hard "elsewhere" than MS for the diagnosis. The minor red flags showed an agreement that, while you should be on the lookout for other diseases with this finding, MS was still quite possible.
However, the Moderate Red Flags showed enormous disagreement among the experts, with some feeling that the finding meant it likely "wasn't MS" and some feeling that it was not a red flag at all.
Juxtacortical lesions - and lesions in the U-Fibers - were listed as moderate red flags to the diagnosis of MS. This means some of the experts felt that they pointed away from MS. When the majority of the lesions were of this type (especially at the vertex of the brain, at the external capsule and the insular regions) those experts felt the physician should investigate a disorder known as CADASIL, and completely rule out embolic infarction (stroke from small clots), and also rule out vasculitis (like from autoimmune disease).
So, I found evidence that some experts feel those juxtacortical lesions might point away from MS. Your neuro has somewhat of a leg to stand on there. Sorry.
CADASIL - is an inheritable disorder marked by frequent and young stokes and heart attacks. If you have such a family history, this should be investigated thoroughly.
If there is any concern about embolic (clots) infarction, you might need to have a cardiac study (I think also called a "bubble study") where they see if there is a hole in the heart that is allowing tiny clots to be thrown up to the brain causing these lesions. One of our longterm members just notified us that they had found this problem in her instead of MS. It can look at lot like MS.
Thanks Quix, I have been on many forums over the years and have so many wonderful MSer friends and it is through them that I have found most of the answers to my problems, and found most of the techniques for dealing with my MS.
Doctors are limited on the amount of information they have time to obtain on any one disease. If it weren't for my MS friends and contacts on line I just am not sure I could survive this disease.
After the first 45 minutes of shock after my DX I hit my computer and started researching and I have been here ever since. Learning to read my own MRI's, learning every medication available, learning how to understand the tests conducted by drug companies and by doctors, and never taking a single thing I am told for granted.
I have advanced MS with so many lesions on my brain and spine they don't even bother trying to count, I have a tethered spine, my spinal cord is pulled down 2 centimeters longer than normal, I have 3 deteriorated discs and the doctors say there is no explanation for why I am able to walk or have any control over my bladder and bowels. I have been told repeatedly I should not be able to stand the pain and they are constantly trying to give me pain meds that I refuse to take. I have some really rough days, but I have learned how to control my pain by controlling my activities and resting. I keep telling the docs I am still going strong because I am irish and too stubborn and too dumb to do otherwise. A doc told me a long time ago that too many people let this disease paralyze them out of fear, much sooner than the disease itself should. I have seen first hand people that sit down out of fear of falling down and never get back up. I have broken a few bones because I won't do that, but they mend.
I love these forums and this one seems like a great one! I am happy to have found it.
Thank you for the warm welcome!
It sounds as if I have a few twins in here. What stories! Qrtrmoon and ShockedToday, thank you for stopping my and sharing with me. I wish you the best of luck as well! ((hugs))
Quix, I have no worries there, thank goodness! I get a stress test and an ultrasound every year because I've had atrial fibrillation and have been of heart meds since I was 26.
http://home.earthlink.net/~cadasil/brochure.htm <--this is very interesting, but with this condition, the symptoms go away within a few days. I've had muscular problems/pain since I was 17 years old, and there isn't a day that goes by that I don't feel some kind of muscular pain. Stopped walking in 1998 for 3 weeks, now have a numb patch on my leg that hasn't gone away in weeks, and all my other embarrassing symptoms started much too young for this disease, imo.
Not only that, but here's what I left out in my brain MRI's to save some time and space in my 1st post:
2009: No mass, mass effect or midline shift. Normal ventricles. Normal basal glanglia. Normal basilar cisterns. Brainstem and cerebellum demonstrate normal signal.
Normal pituitary gland. Normal corpus callosum and hypothalamus. Unremarkable diffuse imaging.
The major intracranial vessels demonstrate appropriate blood flow. Unremarkable orbits. Clear paranasal sinuses. (He refers to me a Neuro)
In 2008, no mention of the above.
2003: No intra-axial or extra-axial collections are seen. I see no acute cortical infarct or hemorrhage. I see no mass of the CP angles.
There are prominent Virchow-Robin spaces but I see no cortical infarct. I see no evidence of acute intracranial event.
http://www.radiologyassistant.nl/en/4556dea65db62 <---Remember this? This is what I wanna send to a few !@#$% Neuros! :)
I've believe I've read it before, yes, but can't be sure if it's been posted here or not. I'm sure you're referring to "Forty-two arcuate hyperintensities along the U-fiber were detected by the software in 28 patients (53%). Twenty-seven lesions (64.3%) were seen in the frontal lobe" etc. It's an oldie, but I still enjoy reading this stuff.
Isolated U-fiber involvement is an underappreciated MR finding in MS. Our preliminary hypothesis is that U-fiber lesions may contribute to neuropsychological impairment, although our observation requires confirmation.
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