I am preparing for my 2 year follow up appt with the MS specialist. I have been in limbo for the last 2years. 6 months ago I saw my general neuro who stated that he was believed that we were dealing with MS as I had numerous spots in the corpus callosum and he was unable to explain these except for MS.
I actually have felt really good in the last several months, or have learned to deal with the daily stuff that has bothered me.
My question is...this doc was very quick to dismiss me before so I need to make sure that I am prepared. Does anyone know what can cause lesions in this area?
From what I understand from my neuro, having spots on on the corpus callosum aren't from migraines. He told me with that first MRI that I had a demyelinating disease which was later diagnosed as MS. You don't get spots when you're in your early 30's from normal aging--this is a bunch of bunk. You must see someone that takes MS and symptoms of MS more seriously. This is infuriating!
Your neuro sounds like an idiot - and not one that would benefit from Tiddly Winks! Something more basic -- hopscotch perhaps?
First, none of us need to be seeing doctors who show that they are not interested in us. We all deserve better. We need doctors who will look at us, listen to us, and think seriously about what we tell him.
Now for the meat and potatoes of the problem. Lesions in the corpus callosum scream MS. It's not that MS is the only thing that can cause lesions there, but it is by far the most common. In MS the lesions are typically in a certain region of the CC that set them aside from other lesions. I would have to lookk that spot up and check.
Optic neuritis screams MS also. More than 40 percent of people who develop ON, and who have no other symptoms, will develop MS. If you throw in even one suggesive MRI lesion the percentage jumps to 80% or greater. So what the h*ll is your neuro thinking? Answer: He obviously isn't.
Now onto the the reason for these lesions. Age related? Rare people in the 20's have tiny nondescript lesions. No young woman should EVER (read that EVER!!!!!!!) be told that her MRI lesions are age-related.
Migraine related? Possibly if they were elsewhere and you do have migraines. Do you?
I have not heard of anything that states that migraines can cause lesions in the CC.
Also, it sounds like you neuro thinks that an MRI that does not change after a few months rules out MS. That is perposterous! MRIs can remain static for years with nothing I have read putting on upper limit on the length of time. As the MRI does not change for more and more years, though, the chances of MS decrease.
BTW - WELCOME BACK! I thought I recognized your moniker from a couple years ago and just checked your profile to see. I always wondered what had happened to you as I always felt you did have MS. (Though I have been wrong on this, I am right far more often)
DEFINITELY sounds like you need a different neuro assessing whether this and your disautonomia is MS. If this is going to be your neurologist, then you need to ask him specifically whether he has read of migraines causing lesions in the CC. Also ask him what other things cause optic neuritis, CC lesions and disautonomia, besides MS. You can tell him that another person in your MS Support group has both MS and Disautonomia. Do NOT tell him about the support group being on the internet.
Also, if this neanderthal also dismisssing MS because of the negative LP?
Well, I have my real doubts about how far you can get with a doc that seems unacquainted with his brain.
Thanks for the welcome back, I have been side-tracked with the dysautonomia stuff for the last 1yr, so I haven't had to deal with this neuro much. However, my general neuro got upset that I kept "putting off the obvious" (his words, not mine) and wants me to see the MS doctor in the office again.
Is there a dysautonomia connection with MS
Yes, I do have a history of migraines. I can't say that I have migraines as I take a prophylactic med that prevents them, I have since I was a teenager (my MRI was clean at that time). So would the lesions occur despite not not actually experiencing the migraines?
I don't know that he has actually ever said anything about my LP, he didn't order it. He is a 2nd opinion, actually much better than the previous one that I was with....that sounds bad when I say it but the first one was HORRIBLE!!!
My quick story. I had ON (later dx as retrobulbar). About two years later I was dx with MS. I kind of knew what my SX and ON meant so I ignored everything until I developed double vision. My lesions were in the CC. They weren't "typical" in appearance. Given my history of ON and symptoms = MS. My LP was negative for 0 band, elevated protein. To this day my neurological exam is normal except for hyper reflexes. The cervical MRI showed evidence of a healed lesion.
I had NO changes in my MRI's for THREE years.
Quix's words ring so true. Really read and reread what she wrote. You will be prepared with her words.
your story (minus the dx) is very similar to mine. I have had at least two bouts of ON, one was dx with active symptoms. I had a previous episode that I didn't complain about but have residual optic nerve thinning and damage. It is two years since I have first had problems.
My MRI had changes in the beginning, but have been stable for the last 18 months. My doctor is a lesion counter, I had 7...not enough by his standards. I started with I think only 3 when this journey began 2 years ago.
LP was normal - just elevated protein.
I looked at Quix's words again. I took notes. She posed very good, logical guestions that I will address at my appt.
this forum is very good. I have not been dx yet with MS, but I know I have it thru all my research. All my symptoms scream MS. I went a couple weeks ago and had the MRI on the 3.0 machine. the findings were 15 lesions, which 2 are deep periventricular & classically shaped invoilving the white matter in the corpus callosum, and 1 more peripheral ovoid classical lesion in the high frontal gray-white junction. What do you think on this. I will be seing my neuro again next week for his findinds. Thanks, Linda
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