Your Analysis

[jamilea]

I'm still working on getting all of my records. I got the ones from my current Neurologist and there are several inaccuracies:

Reviewed initial 2010 event - sudden onset left hemiparesis with patchy left hemibody numbness with
prolonged recovery. She does not recall facial symptoms but was told there was some assymmetry

Per patient, C spine MRI at that time did not show cervical lesion, Current C spine MRI does shown high left c spine hyperintensity at C2. Given MRI at time of what seems to be clinically isolated syndrome, treatment may be warranted. The C spine lesion is not counted in current criteria.

In 2010 while living in Maryland she experienced sudden onset of LUE,LLE weakness and numbness along with headache. She presented to the hospital and MRI brain was performed and showed a few small white matter T2 hyperintensities. She was seen by a neurologist who apparently had low suspicion for multiple sclerosis, but she was lost to follow up before LP and further work up could be completed because she lost her insurance. Patient states she also had MRI of C Spine at this time which did not show any abnormalities. Patient states the weakness and sensory changes in her left arm and leg persisted for months. Since 2010 patient has not had any further episodes, but she does complain of intermittent episodes of feeling extremely fatigued especially exacerbated by heat, occasional shooting pains in both legs, and she also has urinary urgency, but no incontinence. She denies any loss of vision, blurry vision, double vision, dysphagia, focal weakness, focal sensory changes, changes in her speech, rash, dry mouth.

My notes: The issue I have with this is that he did not include all of the other things I told him about 2010 and I did not say that my issues are now intermittent. I and my husband explained to him clear episodes between then and now that weren't really present in a period of maybe two years in between there. He says I deny certain things at the end, but he did not ask me about any of those other things aside from asking me if I've noticed any rashes or if I have a dry mouth.

Continuing with his notes . . .

Comprehensive serum autoimmune panel also was completed all of which returned unremarkable. Event in 2010 could possibly be explained by newly discovered C2 lesion representing a clinically
isolated syndrome, however this remains unclear as patient states she had MRI C Spine at this time which did not show any pathology and patient states she was told she had left sided facial droop as well. Lesions noted on Brain MRI from 2010 would not explain her symptoms. If 2010 event was a clinically isolated syndrome, patient still would not meet dissemination in space criteria for multiple sclerosis diagnosis according to 2010 modified Mcdonald criteria given her current MRI shows only juxtacortical lesions.

RECOMMENDATIONS:

- Patient states she may have documentation of 2010 event. Asked patient to bring this in to her

next appointment for further clarification

- Will discuss case with neuroimunologist to decide next best course of action and whether starting

DMD would be warranted.

My notes: I worry that he doesn't have enough experience as a Neurologist in residency. I wonder if now is a good time to find a specialist?

[jreagan70]

Hi jamilea:

I have a few thoughts.

First, this needs to be explained and reconciled:

The C spine lesion is not counted in current criteria.

If 2010 event was a clinically isolated syndrome, patient still would not meet dissemination in space criteria for multiple sclerosis diagnosis according to 2010 modified McDonald criteria given her current MRI shows only juxtacortical lesions.

However, per the 2010 revised McDonald criteria, dissemination in space can be demonstrated with at least 1 T2 lesion in at least 2 of 4 locations considered characteristic for MS:

• Juxtacortical
• Periventricular
• Infratentorial
• Spinal cord (with lesions within the symptomatic area excluded in patients with brainstem or spinal cord syndromes)

You haven’t said anything that indicates you have a spinal cord syndrome.

So it appears that the McDonald criteria do, in fact, include the spinal cord lesion your resident doctor says doesn’t apply, and that you do meet the criteria for dissemination in space. In your position, that would be the very first thing I bring up at my next appointment.

My notes: The issue I have with this is that he did not include all of the other things I told him about 2010 and I did not say that my issues are now intermittent. I and my husband explained to him clear episodes between then and now that weren't really present in a period of maybe two years in between there.

Continuing with his notes . . . Patient states she may have documentation of 2010 event. Asked patient to bring this in to her next appointment for further clarification

These notes appear to be a summary, so it isn't out of line for a summary to not include ALL the other things you told him about 2010.

He didn't drop the ball altogether, though. His summary acknowledges that there should be more details, and has noted that he asked you to bring in documentation to provide those details.

But 2010 doesn't appear to be the issue. The issue is how he categorized your symptoms between 2010 and now. There may have been a breakdown in communication and assumptions on both sides.

Apparently, your resident doctor didn't find enough detail or clarity in your descriptions of the events to categorize them as acute, inflammatory, demyelinating episodes, which is necessary to identify a second attack and support a diagnosis of clinically definite MS. Remember, symptoms like fatigue and pain are nonspecific and are not criteria that define an attack.

His notes do include things that would help to identify an attack, and this appears to be where communication broke down. Whether you had loss of vision, blurry vision, double vision, dysphagia, focal weakness, focal sensory changes, or changes in speech and somehow forgot to mention them, or whether he specifically asked you those questions and you denied having them, he was left with the impression that you didn't have those between 2010 and now.

The critical issue of accuracy is whether you actually had those or similar symptoms that are indicative of an acute, inflammatory, demyelinating event or you didn't, and whether the record correctly indicates whether you did or didn't. If the record is accurate, it's less critical how your doctor came to the correct conclusion -- whether he specifically asked you, word by word, or if all of those symptoms were conspicuous in their absence in the relating of your history.

All medical records contain some inaccuracies. It's important to separate those that are materially relevant from those that aren't.

If you 1) had any symptoms that are characteristic of an acute, inflammatory, demyelinating event, 2) told your doctor about them or submitted them in writing, and 3) the doctor's records indicate that you did not tell him or denied them, and 4) as a result, the record is factually wrong, it's your obligation as the patient to have the record corrected. If there's anything else in your record that is factually incorrect and materially relevant, you should have it corrected.

It would be helpful if you can supply medical records for any of your episodes between 2010 and now, because that's where the missing diagnostic information could be.

I worry that he doesn't have enough experience as a Neurologist in residency.

As a resident, no, he doesn't have enough experience. Obviously, that's what the residency is for. Doctors need to gain knowledge and experience -- you just have to decide whether you want him learning on your case.

There are some circumstances in which a patient doesn't have much, if any choice, about being seen primarily by a resident or nurse practitioner or physician assistant. I've been with Kaiser for 20 years myself, and I can't think of any of those situations being applicable at Kaiser. (I'm not referring to a NP/PA arranging medications or testing.) If you haven't objected to being examined and directly managed by a resident, Kaiser assumes you agree with it. If you don't, you should tell them that you want to be examined and cared for by a board-certified neurologist, and have them make you an appointment with a neurologist.

I wonder if now is a good time to find a specialist?

A neurologist is a specialist, and the neurologist overseeing your resident is a specialist. The bigger question is whether you should be seeing an MS specialist or neuroimmunologist. Maybe, maybe not. My experience with Kaiser neurology is that their general neurologists' experience, skill and interest with MS is hit or miss. So whether you need to be seen by a subspecialist depends on how good or bad your general neurologist is.

Kaiser has very few MS and neuroimmunology subspecialists. Because of that, you might need to be referred, and the specialist has to decide whether the details of the case merit an appointment with them. If the subspecialist decides not to see a patient personally, they will still consult on the case. That appears to be what your resident was referring to by "Will discuss case with neuroimunologist."

Regardless of whether you see a subspecialist or are managed by a general neurologist, you don't have to continue being seen by a resident if you don't want to. Your experience with the neurologist might not necessarily be any better, but that will presumably remove some of the doctor inexperience from the equation.

[jamilea]

Reagan, I so appreciate how you take the time to answer pretty much everyones' posts in here and in such detail. Thank you again.

The Neurologist called me yesterday to see how I was feeling and asked me to please schedule another appointment . . . to not wait until I get the Cspine MRI disc. I was able to express more clearly to him some of what I go through. I told him that this most recent 'attack' is the most clear and I can tell him how long things lasted. Other than that, I can only give him a journal entry per category and describe what I have gone through over a six year period. I cannot say for certain how long things lasted. I can only approximate.

I did let him know that the reason I didn't keep track is because I had a doctor years ago tell me it was all just anxiety as well as keeping track in the beginning was causing more anxiety. Of course I had anxiety. Who wouldn't when being faced with a possible progressive and neurological brain disease?

I asked him about the criteria and why I don't meet it. He said it's because with MS, they have to correlate lesions with symptoms or something like that. I pressed him and said from the research I've read, it seems that that is very difficult for doctors to do and isn't the basis for diagnosing MS. I also told him what I read in the newly revised criteria. He said, "I know look. The reason we were so adamant about the CSpine MRI is because we thought that maybe it was just too perfect that it is in exactly the spot to explain some of your left sided symptoms. With your case, we are very close to diagnosis. I need to discuss again with the Neuroimmunologist."

Maybe some of the breakdown is coming from my having just had a car accident on May 26th and maybe it's difficult to determine what's from my car accident and what isn't? I was rear ended and blacked out, was diagnosed with whiplash and a concussion. The next week on a Tuesday, my pcp placed me off of work for three weeks to rest. For 4th of July weekend, the hubbs and I went to the desert to go camping. It was 100+ degrees heat and the trip was extremely stressful. Everything that could go wrong went wrong. At the end of day two, we had to leave early because I was so fatigued. I doubled over in severe lower abdominal pain that came in waves (much like my previous colitis like attacks) We came back from that trip and I was down for the count until about two weeks ago. I even caught a bug sometime in between there which caused further issues.

During that time, I've experienced worsening and new cognitive symptoms, nausea, and daily dizziness (lasted for about three weeks) (one of the times when I was standing there talking to someone at work, I felt so dizzy that I had to grab onto the wall. When it went away, it happened again two more times within a ten minute period).

I went to the Urgent care to make sure my heart and blood pressure was OK), fluttering spasmodic type of pain in my rib cage areas that takes my breath away (these can last sometimes up to 15 minutes), stabbing pain in my upper jaw cheek area that goes away after a few minutes (it feels like tooth pain, but I have a clear bill with the dentist), tingling in the right side of my face that lasted two days, urinary urgency and frequency that lasted about two weeks. I even woke up one morning with really bad bladder pain. When it started hurting to walk around, I went in to urgent care. No infection. The pain lasted for three days. My ring and pinky fingertips started tingling and numbness set in within hours. The area grew to about halfway down the side of my hand. It went went away after two days.

The only reason a MRI was done on my brain was because the headaches weren't going away. I'm already writing way too much. Anyway, things started heading off a couple of weeks ago and I started feeling better. Then over this past weekend, Saturday morning we got up to go to a volunteer meeting at a church. We went to a plant nursery after that to pick up a tree and some perennials. Within 20 minutes, I started feeling weak and fatigued. I jumped in the car and blasted the AC while the men loaded things in. We went to meet a friend for lunch but the ride over in the AC helped and I started feeling better. We did patio seating and I just deteriorated from there on. When we got home after about an hour later, I had to go right to the couch. I could barely move around I was so tired. There was tingling and I was wildly dizzy. It took so much effort to even speak.

I told the doctor about this on the phone yesterday. He asked me what happened next. I went to sleep. I had to even though I had had ample sleep the night before. It felt like being drunk (without the nice buzz feeling), hungover, and like weights were tied to my whole body. When I woke up 1.5 hours later, I felt better, but my body didn't work properly the rest of the weekend.

I explained to him that sometimes the fatigue gets so bad that I can barely hold my body up or eat my food. When I exercise, try to run errands, or do things at home, I run out of energy fairly quickly. I mean, when I'm riding my bike, my legs feel heavy and tired after about 15 minutes. He agreed that none of this is normal. All the while though, I get up every day and go to work. I still do life and I've rearranged it in such a way to take care of myself.

I'm not satisfied with his responses about the dissemination in space part either. I do think it was kind of him to call to ask me how I'm feeling and to encourage me to schedule another appointment soon. I do get the impression that he cares. I think the other problem in communication is seeing more than one person when I am in there. I do remember the first consulting Neuro asking me if I have double or blurry vision. I told him that I do experience double vision when I'm trying to pluck my right eyebrow in the mirror. The tweezers are double and it causes me to pinch myself when trying to get a hair. I told him I wasn't having any blurry vision because at the time, I wasn't. A couple of weeks later, I was. It seemed like my vision was not as clear as it was and I was having difficult reading road signs.

I went to the eye doctor. My left eye went from -4.25 to -5.25! My right eye changed from -4.75 to -5.25 which isn't alarming. It seemed like the new prescription helped but now my vision isn't clear again. So I don't know what's going on. She wants to refer me to an Opth.

Perhaps it's better to get all of the bits of information together, make sure the records are factually correct and move forward from there . . . I think at the next appointment, I'm gonna ask him point blank if he thinks it would be a good idea for me to have a referral to a MS specialist to see what he says.

I'm not really sure what my hold up here is. Sorry Reagan for writing so much back to you. Thank you again for reading my posts (sometimes very long winded) and for taking the time to reply.