My appt - opinions appreciated

[salamandertom]

So my last MRI report stated I had a new lesion in my corpus collosum (new since April and the latest MRI was late July). I was presenting with new symptoms of ON in my left eye as well as in my right eye which was an old symptom. I was also seeing trails, which is something I typically do for a little while in the morning, but this was really much worse and making me dizzy and extended. So, he ordered an MRI and had me see the neuro-opth. The neuro-opth had just wanted to do steroids without seeing me btw which he STRONGLY disagreed with.

They didn't do steroids, which was fine with me, b/c my left optic nerve was fine on exam and on MRI - as was my right. Though the MRI does state optic neuritis. The neuro says it is old though. He must be able to tell old from new, though I have had it so often I don't know how he could. LOL. When I asked the neuro opth about the diagnosis in my left eye, which I KNOW I had ON, she was evasive. I mean, I know what ON feels like, looks like and is, I have had it repeatedly. Why are they all of a sudden unwilling to dx it without proof like a MRI, when it is a clinical dx? My left eye is not going to show signs until it does, but I guess it is neither here nor there, it just irritates me. I wonder if the neuro - opth and the neuro had word though, it seems like they may have.

Anyhow, at my appt yesterday the neuro told me that he wouldn't nessicarily call the new lesion a lesion - it was small - but was new - but blah blah blah - I was so confused. LOL. Clearly he was concerned b/c he told me that he wants me to see my new neuro (he is leaving practice) in 2 months. He is not sure the betaseron is working, but wants to give it more time. Personally, I am concerned b/c he didn't say it *wasn't* a new lesion, and he didn't say that he was convinced the beta was working. BUT, I do see his point about how it doesn't start working at full effect until 6 months and we have to let it have time or we just won't know. If we stop we start over from scratch. We might as well just try a bit longer and see.

LOL, I feel like one of my experiments a little bit.

I am seeing a new doctor in a different practice in September so i will get another opinion.

[Redwings]

The neuro-opth had just wanted to do steroids without seeing me btw which he STRONGLY disagreed with.

Prescribing steroids without actually examining the patient isn't good medical practice but is fairly common among neurologists and general ophthalmologists. But for a neuro-ophth to do that is pretty lazy. The neuro-ophth is the "super specialist" who's supposed to make sure that the patient is examined and everything is documented properly. Every time I have an ON flare, my neuro-ophth requires that I come in and get my far and near acuities and color vision checked, as well as do two patterns of visual fields on each eye and be examined by him before he'll prescribe steroids, no matter how recent my last exam was (we do that whole regimen every two months).

[0485c10]

So my last MRI report stated I had a new lesion in my corpus collosum (new since April and the latest MRI was late July). I was presenting with new symptoms of ON in my left eye as well as in my right eye which was an old symptom. I was also seeing trails, which is something I typically do for a little while in the morning, but this was really much worse and making me dizzy and extended.


He is not sure the betaseron is working, but wants to give it more time. Personally, I am concerned b/c he didn't say it *wasn't* a new lesion, and he didn't say that he was convinced the beta was working. BUT, I do see his point about how it doesn't start working at full effect until 6 months and we have to let it have time or we just won't know. If we stop we start over from scratch. We might as well just try a bit longer and see.



I am seeing a new doctor in a different practice in September so i will get another opinion.

i think my comments address these parts of your post. i'm not sure--- more i know what i want to reply after reading your post, i hope i selected the parts that made me want to reply.

my last episode of ON my feet became heavy which i did not recognized, i have had many sensation in my feet but this was the first time they were so heavy.

they treated the ON with 5 days of steroids on my phone call verbal report of ON...like you said they just believe me without question when i self-diagnose & report ON..... but this new heaviness in my feet very much worried me, especially since i use tysabri and am passed the 2 year, where the risk of PML gets greater.

I was panicked, thought it might be an initial symptom of PML. i asked for a brain MRI. She did order the brain mri, i think mostly to calm me down not that she was worried about PML. (i hate how they so often can predict the rest of the story like that)

the brain mri had a closer focus to the optic nerves, & she also ordered a cervical spine mri, which would cause ms changes in my feet. i just wanted that brain mri, because i was worried about PML which is in the brain not spine when it happens.

the optic nerve showed a still enhancing lesion after 5 days of steroids but clinically improving. i thought i was right it was ON! i'm a good diagnostician

the cervical spine MRI showed the same 4 lesions unchanged as last time...at my follow up appointment with the doc, i asked how come there was no new lesions for this new symptom of heavy feet?. she told me that a new lesion, which the ON was... will cause old lesions to act up also & they may not act up in the same way that i recognized. they may affect me differently when an older lesion acts up.


2. 6 months seems an awful long time for betaseron to be effective. I'm sorry it hasn't been immediately effective in you. i agree now that you have started betaseron you have to give it an adequate time for an evaluation b/4 you discard one of the treatments for MS. they are not unlimited, there are more choices now but still not infinite # of choices. Any plans for what next? ...maybe, Tysabri?

3., I got my 2nd opinions the same way, my neuros moved then i had to go to their replacement. doc's are trained to always diagnose themself, whoever they treat. not just take a previous doc's diagnosis but confirm it for themself b/4 treating. thats why the first appointment always costs more, even when going to a replacement.not just take the previous doc's diagnosis---2nd opinions

Perhaps they are putting off changing your meds until you have changed to your new doc. my tysabri switch happened with a new doc..good luck