New and confused about MRI results

[palmtree]

This is my 2 cents: I HOPE YOU DONT HAVE MS! The fact that no lesions are present on the MRI is a good sign. I understand your suggestion of starting a DMD before you are diagnosed. I agree.

After my first MRI it wasn't conclusive but when I went into my next appointment. She said, "I think the best thing right now is to treat". It wasn't until later that the final diagnosis was made.

So, if you want to know if anyone has started a DMD before Dx, the answer is, yes.

[jreagan70]

I guess I was assuming with what the radiologist said in the report it would fall under the CIS label

Hi Kacerpie:

That's open to interpretation, and I'll explain that in a minute.

First, it's important to establish that licensed medical doctors have wide latitude in what they're allowed to do, short of malpractice.

That being said, it's also a tenet of medicine that doctors don't treat patients for diseases they don't have -- meaning diseases they have no evidence of, or diseases they haven't been diagnosed with. If they start treatment, it implies that they have diagnosed the patient with something to which the treatment applies.

As it pertains to MS, clinically isolated syndrome (CIS) means that the person meets ALL of the criteria for a diagnosis of MS except a second episode, which would meet the criterion for dissemination in time. The person's history and symptoms must be consistent with MS, and their clinical exam must be consistent with MS. And since the diagnostic criteria rely so heavily on MRI findings, the person's MRIs should be consistent with MS. The findings must include dissemination in space, meaning evidence of demyelinating episodes in more than one place in the central nervous system.

The reason your case is open to interpretation is that it must be determined whether nonspecific lesions meet the criterion for MRI evidence that's consistent with a demyelinating episode. And that interpretation depends on the experience and skills of the neurologist looking at the MRI and evaluating the case.

Even a neurologist who does have experience with MS may not have enough experience or sound judgement to decide whether nonspecific lesions meet that criterion for CIS. And two neurologists who are experienced and competent can look at the same MRI and interpret it differently.

So there's no telling how your neurologists will interpret your nonspecific brain lesions. You might be diagnosed with CIS and given the opportunity to start an MS DMD, you might not. You might be given the opportunity to start a DMD even without a diagnosis of CIS because doctors are free to act on their judgement, as long as they don't commit malpractice.

Because Kaiser is such a large group, they do have some universal standards they expect their doctors to adhere to. There still is room for individual judgement. Because your lesions are nonspecific, it's not likely that you would be diagnosed with CIS at the first neuro visit. It depends on how your history and MRIs are interpreted, and you may need to do some more rule-outs first.

[Kacerpie]

PalmTree...

This is my 2 cents: I HOPE YOU DONT HAVE MS! The fact that no lesions are present on the MRI is a good sign. I understand your suggestion of starting a DMD before you are diagnosed. I agree.

After my first MRI it wasn't conclusive but when I went into my next appointment. She said, "I think the best thing right now is to treat". It wasn't until later that the final diagnosis was made.

So, if you want to know if anyone has started a DMD before Dx, the answer is, yes.

Thank you for your 2 cents, Palmtree. They are very much appreciated. What were the symptoms that got you to the neuro in the beginning? Was it your first trip to see them? It seems, as a previous poster stated, that it very well could be nothing but ON and I am freaking out over a slim chance it is something more, however I haven't been able to find much online that I can understand. I guess at this point I am going to wait until I see the neuro and take it one step at a time.

[Kacerpie]

Ideas?

Hi Kacerpie:

Because Kaiser is such a large group, they do have some universal standards they expect their doctors to adhere to. There still is room for individual judgement. Because your lesions are nonspecific, it's not likely that you would be diagnosed with CIS at the first neuro visit. It depends on how your history and MRIs are interpreted, and you may need to do some more rule-outs first.

It seems as though this is simply the beginning of a possibly long journey with little to no answers in the foreseeable future.

What should I be expecting tomorrow with my neuro appointment?

Also, I am sure you see quiet a few people come around with a similar story to mine... How frequently does it turn into something?

[jreagan70]

Hi Kacerpie:

I don't know the neurologist you'll be seeing, and it's been several years since I transferred out of neurology in Orange County, so I don't know what the current "atmosphere" for MS is in Orange County. I don't know what to make of them having you see two neurologists in the same month.

The first visit should be pretty straightforward. The neuro should look at your referral, ask you some questions about your symptoms and do a physical exam. She might or might not go over your MRIs with you (my neuros in OC never showed my my MRIs). If she doesn't, it could be worth asking about, because the interpretation of nonspecific lesions could determine where the investigation into your case goes.

Many different studies around the world have led to different statistics about how often a first episode of optic neuritis goes on to become clinically definite MS. The general trend is that, if no brain lesions are present at the time of the first episode of ON, the chances are low(er) that the person will go on to develop MS. "Lower" seems to mean up to about 25% within 5 years, somewhat higher over 10 to 15 years. If there are brain lesions present at the time of the first episode of ON, chances are high (in the range of 75-85%) that the person will go on to develop MS within 5 years, higher over 10 too 15 years.

One thing that is widely accepted by MS experts is that one episode of optic neuritis without brain lesions is not an indication for starting an MS treatment med, since most people with that presentation never go on to develop MS. The question for you is whether your nonspecific lesions count as lesions for the purpose of putting you into the category of low or high risk. And for that, you'll have to wait and see what happens.

I hope your appointment goes well. My only recommendation is to try to listen actively during your appointment and ask questions while you're there. (Write down the answers if you need to.) It becomes much harder to speculate later about what the doctor might have meant, so try to get everything cleared up before you leave the office. Let us know what happens.

[Kacerpie]

Hi Kacerpie:

I don't know the neurologist you'll be seeing, and it's been several years since I transferred out of neurology in Orange County, so I don't know what the current "atmosphere" for MS is in Orange County. I don't know what to make of them having you see two neurologists in the same month.

The first visit should be pretty straightforward. The neuro should look at your referral, ask you some questions about your symptoms and do a physical exam. She might or might not go over your MRIs with you (my neuros in OC never showed my my MRIs). If she doesn't, it could be worth asking about, because the interpretation of nonspecific lesions could determine where the investigation into your case goes.

Many different studies around the world have led to different statistics about how often a first episode of optic neuritis goes on to become clinically definite MS. The general trend is that, if no brain lesions are present at the time of the first episode of ON, the chances are low(er) that the person will go on to develop MS. "Lower" seems to mean up to about 25% within 5 years, somewhat higher over 10 to 15 years. If there are brain lesions present at the time of the first episode of ON, chances are high (in the range of 75-85%) that the person will go on to develop MS within 5 years, higher over 10 too 15 years.

One thing that is widely accepted by MS experts is that one episode of optic neuritis without brain lesions is not an indication for starting an MS treatment med, since most people with that presentation never go on to develop MS. The question for you is whether your nonspecific lesions count as lesions for the purpose of putting you into the category of low or high risk. And for that, you'll have to wait and see what happens.

I hope your appointment goes well. My only recommendation is to try to listen actively during your appointment and ask questions while you're there. (Write down the answers if you need to.) It becomes much harder to speculate later about what the doctor might have meant, so try to get everything cleared up before you leave the office. Let us know what happens.

The 2 appointments is my doing. After hearing that Dr Hagh was the who the patients that were in the infusion area liked, I requested to have my appointment with her. When I was called back to schedule it I was told the soonest she could see me was 6 weeks out. I made the appointment, but also asked if there was anyone I could see sooner.

My mom will be coming back out to CA for the appointment with her at the end of the month, and today's appointment will be just me.

I will absolutely ask about the MRI, as well as taking notes. As was made painfully apparent by my restating what I heard about the results of the MRI, notes would be a good thing to have.

Once I have a free moment tonight Ill jump on and update. Thank you again for helping with all this. It really has been great to kind my thoughts.

[Kacerpie]

So, Dr Saghafi was a doll. She went over my MRI results. She was only able to see one of the 2 lesions the radiologist found. She basically said although it doesn't look like an MS lesion, it was something she felt we needed to look into further. She ordered a spinal MRI that Ill be doing Sunday, as well as some more blood tests, which I will be googling tonight to find out what they are all about. For the MRI she ordered it with no contrast. She basically said she feels with the non spacific lesion I fall somewhere in between the 20% chance of developing, and the 80% chance if I had a normal MS lesion. The blood test are below.

ANA [86038 CPT(R)]
	ANCA (TITER AND PATTERN) [86256 CPT(R)]
	C-REACTIVE PROTEIN [86140 CPT(R)]
	CARDIOLIPIN IGG AND IGM [206475 Custom]
	COMPLEMENT C3 AND C4 [200440 Custom]
	DOUBLE STRANDED DNA ANTIBODY [86225 CPT(R)]
	LUPUS ANTICOAGULANT [85705 CPT(R)]
	MRI CERVICAL SPINE NO CONTRAST [72141 CPT(R)]
	MRI THORACIC SPINE NO CONTRAST [72146 CPT(R)]
	PROTEIN C ACTIVITY [85303 CPT(R)]
	PROTEIN S ACTIVITY [85306 CPT(R)]

[jreagan70]

Hi Kacerpie:

I'm glad your neuro appointment went well. Again, everything sounds pretty straightforward. The spinal MRIs are for completeness (contrast isn't necessary because you aren't having spinal cord symptoms) and the blood work is to evaluate for/rule out inflammation and other conditions that can cause the same signs/symptoms as MS. (I've had a full rheumatology panel done at least twice, with chest X-ray to rule out sarcoidosis.)

So my best recommendation for now is to live your life as normally as possible until the test results come in; occupy your mind with pretty much anything else in the meantime. There will be plenty of time to think about your test results later. For now, your job is to be happy.

[Kacerpie]

Happy Happy Happy

Hi Kacerpie:

I'm glad your neuro appointment went well. Again, everything sounds pretty straightforward. The spinal MRIs are for completeness (contrast isn't necessary because you aren't having spinal cord symptoms) and the blood work is to evaluate for/rule out inflammation and other conditions that can cause the same signs/symptoms as MS. (I've had a full rheumatology panel done at least twice, with chest X-ray to rule out sarcoidosis.)

So my best recommendation for now is to live your life as normally as possible until the test results come in; occupy your mind with pretty much anything else in the meantime. There will be plenty of time to think about your test results later. For now, your job is to be happy.

Thank you! I have to say, between working from home for part of the day today, finding out that my work will be offering "legal" insurance (so we can finally finish a step parent adoption for my two oldest girls, and get a will/estate done), and having 2 of my 3 cats laying by me I am pretty darn happy. Thank you for your help with everything, and I am sure I will update once I get more info. I have a feeling this will just be the new SNAFU, but as long as Im breathing and my kids and DH are healthy, I'm good.

[trevvian]

Insurance thoughts

Slightly off topic here, but you said open enrollment is coming up. If you can, make sure you sign up for disability insurance.

Also, maybe look into long term care insurance. With any abnormal MRI, it may be too late, but try.

I hope you don't have MS, but if you do, you will not be able to buy private life, LTC, or disability insurance post-Dx. Look into a policy & find out what its look back clause is, if you are DX'd after buying it. (Note, health insurance can no longer exclude you for a preexisting condition. But the others can, and will.)

[pennstater]

Slightly off topic here, but you said open enrollment is coming up. If you can, make sure you sign up for disability insurance.

Also, maybe look into long term care insurance. With any abnormal MRI, it may be too late, but try.

I hope you don't have MS, but if you do, you will not be able to buy private life, LTC, or disability insurance post-Dx. Look into a policy & find out what its look back clause is, if you are DX'd after buying it. (Note, health insurance can no longer exclude you for a preexisting condition. But the others can, and will.)

Just to add a few clarifications on LTD:

1. Employer group LTD coverage usually does havea pre-existing condition clause, but it does not usually mean you have nocoverage. I was covered under mine.
   
   1. Thelook back clause was 2 years, but that just meant that if I had been treated inprior 2 years for MS (any doctor appointments), I had to wait 12 months from myenrollment effective before being eligible to go out on LTD. The time requirements vary by policy. They originally denied claim, but not due topre-existing, due to “not meeting disability definition”. But that happens frequently, they hope peopledon’t appeal and fight.
      
   2. Mycompany also had switched insurance carriers and there was a clause in it thatif I had a pre-existing condition and had previously been on LTD, if the sameonset-disability resulted in my current absence, the prior insurer wasresponsible. For MS, since it relapsesand remits, hard to prove same onset date. However, if you had surgery and subsequently developed complicationsrelated to it, the prior LTD carrier on hook.
   
   
2. Iwas also able to obtain an individual LTD policy. A group I belonged to had open enrollmentwith no medical disclosure. The caveatwas that if I made any claim in first 24 months related to pre-existingcondition (with 5 year look back), I would not be covered and the policy wouldbe cancelled. After 24 months, allcovered. While the coverage is about ½ whatSSDI would pay if ever approved, it helps a lotand like SSDI, not taxable. And they payed right away based on my neuro’sdocumentation and disability statements, unlike SSDI and employer LTD, which I hadto fight.
   

Related to life insurance, some are starting to notlist MS as a screening question and/or major health factor, as the gap betweenhealthy people and MS lifespan closes. Iam keeping my eye out and hope to see something soon.
As for long-term care, we are a lost cause. But a lot of financial advisors will say itis a waste of money anyway, as better off investing due to high premiums andcoverage gaps.
My advice is to really read policies, ask questionswithout divulging you have MS (pre-exsting could be asthma, allergies, etc…). Also, take a look at any of the offers thatcome thru any group you belong to, you never know. I used to just throw them all away, butreally lucked out.

[Kacerpie]

Insurance

Thank you for all the input. It is definitely helpful.

I do have LTD through work, and have been with the company for going on 4 years. The only "issue" might be that I *think* they are changing carriers (and the one I think they are going to has HORRID reviews online of making people jump through hoops). As things aren't too advanced, I'm not really concerned about it, although I will definitely pay more attention than normal during our presentation on Thursday, and will ask about the pre-existing issues.

I looked into some private insurances for long term care, and was having trouble finding someone that would entertain quoting someone under 40.

When it comes to medical, I spoke with my old family doctor that I trust implicitly, and she actually advised I stay with Kaiser as all the test, prescriptions, etc can get out of control quickly (currently I have a $0.00 copay for MRI's), so I think on the health insurance front I will stay with them, and if I end up getting a dx in the future, I will see about transferring to the Sunset location as they have 1 MS neuro that is very active in research, and 2 that she has trained.

In better news all recently ordered blood test have come back normal so far (although I am still waiting on the NMO antibody test), and my spinal MRI came back completely clean. I am taking this as I am not out of the woods, however I am not further lost.

[Kacerpie]

Results from both appointments.

Do you remember that in my first post I said that some of the worst doctors I've ever had have been at Kaiser, including their local "MS specialist"? Well, maybe she's gotten better and you'll have a good experience with her. I don't know the first neurologist you have an appointment with, but my overall experience with the neurologists in Orange County was so bad that I had to transfer my neuro care into LA county.

Well, I can understand why you wouldn't be a fan of her. Although she was very nice, she was a little odd.

Everything turned out well for the exam, and it lasted longer than I expected, however with all the talking she did, nothing came as a surprise or was anything new that I had not heard.

She started by making a huge deal of looking at the MRI and only finding one of the lesions. She said it was nothing like you would see in MS when it comes to shape or location- which is/was great news and she ordered a follow up MRI in 6 months. From there she ordered blood tests of Vit B and D, and launched into a lecture while ignoring me the entire time. At the end she even pitched a diet called the Cinch diet that after a bit of research is a bit faddish... I almost wonder if she is getting kick backs.

At the end however it took an odd turn and she finished with "If you have a symptom that last for longer than 24 hours, email the other neuro (she told me she was only for VERY serious MS cases and she simply did not have time to be my go too), get to the ER and start steroids" which I though was odd considering she in no uncertain terms told me I was healthy.

[jreagan70]

Hi Kacerpie:

Thanks for the update. It sounds like you're in that nonexciting but safe area known as "stable." Which is good.

It's interesting that Kaiser's OC "MS specialist" has learned how to be "nice." Seriously, I put off having my lumbar puncture for a couple of years because she was so mean and unpleasant that I wasn't going to let her touch me. I had another neuro do it and it was one of the best decisions I ever made.

It sounds like this neuro is going to become the Kaiser OC "MS specialist" to take the load off the MS specialist in LA. When I saw that neuro, she was only seeing patients one day per week and was relying heavily on her NP. So it sound like you won't be able to see either one of them unless your case turns into something really unusual. Just as well that you like the first neuro you saw, because that's who you're going to be following up with.

I do want to add something really important here. When the specialist said that if you have symptoms lasting more than 24 hours you should contact the first neuro. That does NOT apply to optic neuritis or visual symptoms. For another episode of optic neuritis or visual symptoms of any kind, contact Ophthalmology. Neurology doesn't know what to do about visual problems, and they aren't trained or equipped to work you up properly. When I would show Dr. H my visual field printouts, her eyes would glaze over.

It also sounds like a decision has been made about how to get steroids into someone on short notice -- send patients to the ER, which might incur a hefty copay, depending on your plan. And then you have to figure out how to get it done three days in a row.

I used to be able to go to nurse clinic at night without an appointment for my steroid IV's, but OC did away with that several years ago. NO service wanted to take on short-notice IVs. The infusion center is already booked with appointments, so they don't have room for short-notice IVs. Nurse clinic won't take them anymore, and the urgent visit centers don't want to do them, either.

I got evidence of that with my last steroid IV at the Garden Grove urgent visit clinic. The nurse hooked me up right at her dinner time and then left me all alone in the clinic for an hour. No one came to check on me while I was dripping. An hour later, when my bag was empty and the infusion pump was beeping, nobody came. Finally, a nurse who had no idea who I was or why I was there showed up. And because she didn't know who I was or why I was there, she didn't feel comfortable unhooking me and dismissing me.

I ended up pulling out my own IV and searching through the drawers to find gauze and tape so I could patch myself up and leave. Nobody said anything. And it took three months for someone to make a notation in my medical record, indicating that I was ever there.

After that, my neuro-ophth switched me to oral steroids for my flares, so I've never had trouble getting an IV again.

Bottom line: if your next onset of symptoms is visual, call Ophthalmology, not neurology. Call the neuro for anything else. Then it can be decided what to do about it.

I hope everything stays quiet for you.