You should certainly proceed with another opinion if you aren't convinced on your diagnosis! I think we can be quite accurate sometimes when we have a strong sense about such things.
I'm curious - if you don't mind - what made them think your lesions resulted from MS rather than the lupus?
You are so right--the pieces just do not fit yet, for me. I can accept illness--I have sle and I get that bodies are not perfect. Something just tells me this is wrong.
I saw another neuro early on, but I did not go in for a full second opinion yet.
Lesions can definitely grow!
Aha! Now I get it. A fellow disapprover (is that even a word) haha
I understand better now what you are feeling, and why you want to know. A little about me....I too felt my doctors were all wrong, that surely I had a stroke, or the herniations in my neck caused the damage in my spine, thought it's why I couldn't walk right, and my head, well, I just knew I must of smoked too many cigarettes lol
So, I went to a 2nd opinion at a well known hospital. A hematologist (just for good measure incase it was APS (or hughes syndrome), a neurosurgeon (yrs later for the surgeon) etc - came up empty.
If it was a soft dx like you mention then I completely understand your reluctance to believe. I too do not feel it's denial. It's just that not all pieces (in your mind) fit the bill.
So, where to from here? Have you explored a 2nd opinion? At least to set your mind at ease?
-shell
MS lesions can grow, stay the same or even disappear!
I believe there is a Health Page (written by Doc Quix of course) titled something like "MS Lesions - They come and they go but mostly they come." Maybe it would shed some light on your question.
It's good (in a sick kind of way I suppose) to see you come through again. Do I remember you having some kind of mediastinal growth show up on an x-ray? If so, anything ever come of that?
It is easy-ish to get into my neuro (a month-6 weeks) but getting any help over the phone is just horrible.
I am hoping now that those "migraine spots" (even though I do not have migraines) grow in size...
I don't think any of us have run across that, or they would have replied. I know the wait game is hard, I have to make my neuro appts 6 months in advance to get one! Keep us posted, we all learn from each other
I don't think it is denial. It was a soft call, and now that I have my old film, and see that a spot was there before I ever had symptoms, I wonder if it could be something else. This particular spot has doubled in size over the last few years though. I googled changes in wmh and I did not find much at all, thus I hoped the forum could lend some insight as I will not be able to see my neuro for weeks, and asking a question over the phone is always so damn hard.
So, back to the question: Do spots (any and all :) grow over time, or do ms lesions typically stay the same size?
Does the fact that one of my spots doubled support my neuro'd dx of ms....or is it something else?
I faxed him this older report as I forgot I even had this MRI back in 2007.
ah yes, we all go thru the denial period, its like the 5 stages of grief accompanying death, and we bounce in and out of them! Just talk to your neuro some more.
Hi slowe, thank you for replying.
I was diagnosed, though I'm working to disprove it, as I feel it is not ms at this point.
Do ms lesions grow like that? Would ischemic spots from other causes expand like that?
Hey Vamanos,
I cannot remember - are you are dx'd? If so, it would be of interest (my opinion) to the doctor, especially where disease modifiers are concerned.
Activity, increase in size etc., could dictate a change in meds if it's felt something else may be more useful. Everyone is different with MS as you know, so what is common in one, may not be in another.
Regardless, this should be discussed with your doc for sure.
Hope this helps,
-shell