Neurologist Problems...Anything I can do?

[anon07072023]

Hi Everyone,

I received a copy of my records from my 2nd appt now with the neurologist at the MS Center.  

I'm so frustrated by their carelessness and lack of attention to my details.  And if it's not these excuses that's behind the problems, then I'm afraid that something more sinister may be going on.

My 1st appt a month prior to my 2nd appt, after his review of my previous MRIs, he said to me & it's listed in his report that I have 6 T2 hyperintense lesions - 4 of which are periventricular, 1 infratentorial lesion, 3 T1 black holes (and the 2 lesions on my spine).

My 2nd appt after another brain MRI, he lists in his report that my MRI is UNCHANGED from my previous MRIs.  And then he proceeds to list my current lesions - 5 high signal lesions located throughout the subcoritcal white matter - 2 located in the periventricular spaces.
(And it's "unchanged??"  Hmmm, then where did the other 2 periventricular lesions go, and where is the extra lesion located??? If I previously had 2 that were non-periventricular, and now I have 3 that are non-periventricular.)

I'm not a rocket scientist - but how can my MRIs be unchanged - when you look at the amount and the location of the lesions - they have DEFINITELY changed.  

On top of that, he lists in his report that I have not had any new symptoms or lesions for over 18 months.  Yet, if you look at the report from the 1st appt, it lists a ton of new symptoms that I've had since my 1st MRI that was 15 months ago.
He states that since my spinal fluid was normal, and my MRI is "unchanged," he would like to understand my "rate of development of lesions" before prescribing disease-modifying therapies.  Although, he told me he would prescribe Copaxone if I really wanted it, and after I left, I called back and asked to start it.  

At least this neuro seems to be more on target than my last neuro. My last MS neuro didn't really review my MRI scans himself - in fact, he never said that I had any lesions in my brain. But still, what is wrong with these people???  Aside from looking for another neuro yet again - even though there aren't any more to go to on my insurance plan (since we have so few where I live), is there anything else that I can do?  

Has anyone else notice huge discrepancies?  

Thanks,
Kelly      

[figuerpa]

Kelly,

Everyone pretty much said everything about your first post. At least he is willing to start Copaxone without saying its deffinate MS.

Your second post. I would and I have talked to my doctor about things that he says one appointment and says its nothing the next. This is your body and if he is going to say one thing one time, how would it change the next time. And if it can change you have a right to know how it changed.

You won't offend him, just ask him in a nice tone to explain the things you want to know. Maybe even highlight the parts of the reports you want him to explain to you so that you don't forget somehting.

My neuro doesn't get offended, well if he does I can't tell, but like Lulu said if this is going to be your doctor then you should be able to trust him and trust is earned not bought. Give it a shot and talk to him to see what he has to say.

I have to remind my neuro sometimes of things we discussed in the past or of some of my test results. A while back we were talking and he said that I didn't have lesions in the right parts of my brain, then I reminded him that the second MRI showed a lesion that he told me was in the part of the brain for MS.

I also asked questions reguarding what the neuro-radiologist wrote about my MRI's which made him open them and re-read them.

They see so many patients that there is no way they can remember everything and sometimes we just need to remind them in a nice way.

Good luck and let us know
Paula

[anon07072023]

Hi again,

I was wondering about going to see him to discuss the discrepencies in my my report i.e .the lesion number & locations and the fact that he states that I have had NO NEW symptoms in 18 months (this last part really makes me mad!).

I mean would that be OK to do?  Because I think that it's something that I really probably should do.  Is that looked upon as a no-no usually?  I don't want to necessarily offend him, but if he is going to be my doctor, we need to be on the same page with everything.

Any thoughts?
  

[candy158]

Hi to you, YES, YES, YES, to all your questions and comments.

We seem to have the same neuro's .  I wonder if it is because we are going to a Clinic and not a Dr's office per-say !!!   I have seen every neuro in our clinic, and not happy with any of them.

Yesterday though, we are being scheduled to go to Vancouver UBC clinic and be tested and looked at there.  Do they have somewhere like that that they could refer you to ????

Good luck, and hang in there,

take care,
Candy




in there............ there is one out there for both of us.

[Lulu54]

Kelly,
The relationship you havewith your neurologist is going to be a life-long relationship.  Don't you want it to be with someone you trust?  I would change again and again until I felt like I had connected with the right one.

good luck,
Lulu

[HVAC]

In our area we have about 10,000 people seeing 5 Neurologists who Specialize in MS at any given month. To me I do not know how any of them can remember anybody especially at the beginning of diagnosis. I had one even tell me I was a not really important until I was 100% diagnosed which took two years. My reports have been pretty scary. One guy who thought I had MS wrote nothing about it, One lady said I did not have MS but symptoms of it and liked having Migraine headaches. The next guy looked at the same MRI a few months apart, the first time saying I had all these weird neurological symptoms but the MRI was not showing MS, the second time he said the MRI showed dawson's fingers and was clearly MS. Every time I saw the guy I felt he had no clue who I was and I was right after I left and got his notes.

Now I finally have a Neurologist who has a huge number of patients but he does no what is going on with my case and who I am. I am so glad I had the courage to keep looking. I am not the kind of person who switches Doctors.

Alex

[essdipity]

Hey, Kelly, yes yes yes.

I have seen things on my reports that we didn't discuss and are not accurate. Also, though this is harder for me to process, omissions in other areas we did discuss. Fortunately for me, though, the discrepancies haven't been 'huge' and in the final analysis probably haven't affected any outcomes. And I do have a diagnosis and am on Avonex.

I've been through a big bunch of neuros and this is the best by far. His NP is even better, so I'm sticking with that. It does get wearisome starting over, believe me I know.

If you can't see any other MS neuros, can you get a consult with a regular neuro in your area? That's the best idea I can come up with right now. Hope others here have better ones.

ess