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))