New and confused about MRI results

[Kacerpie]

Hi! I'm Kacie, and although I have been lurking for the last month or so and trying to learn as much second had information about MS I have not posted.

About 4 weeks ago I was diagnosed with ON, and referred for an MRI both with and without contrast. Last Tuesday I received the results from my ophthalmologist. The radiologist did not mention lesions, but did say it looked like I was in beginning stages of either demyelination or my nerves had "above average" space around them. After doing some research, I was able to look at some other things that I have simply ignored and to also be symptoms (my hands noticeably shake when at rest and my feet/lower legs cramp up on a semi-regular basis while sleeping or driving).

I have an upcoming appointment with a neurologist on 10/5, however before then I had a few questions someone might be able to answer, or at least give some helpful advice.

It sounds like a DX might not be in the cards for the first Neuro apt, however from everything I have read, it is better to start DMD a bit too early rather than a bit too late.

Also, how important is an MS Specialist? I am currently with Kaiser and they have none around me, just regular Neuros. Thank you in advance for all the help!

[jreagan70]

The radiologist did not mention lesions, but did say it looked like I was in beginning stages of either demyelination or my nerves had "above average" space around them.

I can understand why you're confused because that statement makes absolutely no sense. Demyelination does not present as "space" around optic nerves, and there isn't a way to judge demyelination -- early or late -- by "space" around optic nerves. What did the ophthalmologist say about that? That's such a strange statement that I can't believe s/he wouldn't correct it if it came up in conversation.

The radiologist did not mention lesions

That's important because the diagnostic criteria for MS place great importance on the appearance of lesions on MRI. The criteria place so much emphasis on the appearance of characteristic lesions on MRI that it's difficult -- at least in developed countries with ready access to MRIs -- to get a diagnosis of MS without a positive MRI.

Lesions caused by MS have a characteristic appearance, so nonspecific lesions won't get you a quick diagnosis of MS.

About 5% of people who have been diagnosed with MS had no visible lesions on MRI at the time of diagnosis. But they had other test results that were characteristic enough of MS that, when added to other clinical evidence, were supportive enough of MS that a diagnosis could be made. MS lesions show up in those people at some later date. There are extremely rare stories about people who are diagnosed with MS who apparently never develop lesions, but they're too rare to even consider. And there's great debate about how it's possible to have MS -- a condition that's named for multiple sclerotic lesions -- without actually showing any sclerotic lesions. It's like claiming to have purple creeping crud without any evidence of anything purple, creeping or cruddy.

It's possible that, if the neurologist actually looks at your MRIs her/himself, s/he might find lesions characteristic of MS that the radiologist missed or dismissed. That's an unsettling thought, but it happens sometimes. And sometimes neurologists don't actually look at MRIs but instead depend on the radiologist, whose job it is to accurately read MRIs but sometimes doesn't.

It sounds like a DX might not be in the cards for the first Neuro apt, however from everything I have read, it is better to start DMD a bit too early rather than a bit too late.

First, without characteristic lesions on your MRI, there's no way you'll get a diagnosis at the first neuro appointment. Even if you had characteristic lesions, the diagnostic criteria for MS require that all other possible causes for the symptoms and lesions must be ruled out first. So your neuro would have to run some other tests to rule out other causes before making a diagnosis of MS. There's only one situation I know of in which a neuro might diagnose someone with MS at a first appointment, and you don't fit that situation.

And, while research has shown that people who start an MS DMD earlier rather than later tend to have better outcomes, "too early" does not include starting a DMD before a person is diagnosed with MS. It's a tenet of medicine that a doctor doesn't treat a person for a disease they don't have (which includes not treating a person for a disease they have no evidence of having).

The "early" you might have read about includes a condition called clinically isolated syndrome (CIS). But CIS is a condition in which the person meets all of the criteria for MS -- including central nervous system lesions on MRI, evidence of dissemination in space, and associated symptoms -- except that a diagnosis of CIS requires only one demyelinating "attack" and a diagnosis of MS requires two attacks. The only exception for CIS is dissemination in time -- every other criterion for MS must be met in order for you to get a diagnosis of CIS and the option of starting on a DMD.

Of course, except for outright malpractice, a physician can do pretty much whatever s/he wants to, and can ignore the diagnostic criteria and prescribing protocols if s/he wants to.

After doing some research, I was able to look at some other things that I have simply ignored and to also be symptoms (my hands noticeably shake when at rest and my feet/lower legs cramp up on a semi-regular basis while sleeping or driving).

In MS, "attacks" must be characteristic of a demyelinating event. So nonspecific symptoms don't count as much toward diagnosis as specific symptoms do. Legs cramping only during particular tasks is not necessarily associated with demyelination, so may not rate highly in helping your neuro toward a diagnosis of MS. The diagnostic criteria require that other causes of leg cramps be ruled out first.

And while one shaking hand might be suggestive of MS (because of how the nervous system is "wired", two shaking hands actually is less suggestive of MS, especially if no lesions are found on your MRIs.

Also, how important is an MS Specialist? I am currently with Kaiser and they have none around me, just regular Neuros. Thank you in advance for all the help!

Some general neuros have good knowledge of MS and its diagnosis and treatment, and an MS specialist might not be necessary. But some general neuros are complete duds and seem to remember very little of what they learned about MS in medical school 15 years or so earlier. So they surely haven't kept up with diagnostic wisdom or latest treatments.

Like all general doctors and specialists at Kaiser, Kaiser has a range of excellent doctors to average to terrible, bordering on incompetent. So how well you do with a Kaiser neuro depends on where in the country you live and which neuro you're coincidentally assigned to. It's true of Kaiser neuros and its true of Kaiser ophthalmologists and it's true of every other specialist . I've been with Kaiser for almost 20 years. Some of the worst doctors I've ever had have been at Kaiser (unfortunately, several of them were neuros, including their local "MS specialist"), and some of the best doctors I've ever had have been at Kaiser.

Kaiser, as a medical entity, follows diagnostic protocols, so it's doubtful that a Kaiser neuro would diagnose you with MS or even CIS if you don't meet the diagnostic criteria. That means no DMD without a diagnosis. If the general neuros don't seem able to competently handle your case, then you can ask for a referral out of your region or out of your network to a neuro more experienced with MS. But you'll have to go through the preliminary steps first.

[emrf2b]

Hi Kacie,

The previous postee handled the technical side of things pretty well, but I thought I'd add some things from my experience. This time last year I was going through the diagnosis process, which is frightening and stressful, as you know. I, too, had ON as a catalyst symptom. It took months before I was officially diagnosed. This was after an MRI (with lesions) and a positive lumbar puncture.

Something that is quite important with all the tests you'll be receiving is to get copies! I have all of my MRI's on CD from the imaging site. This is vital for you especially since you may change doctors. You can also look at these images on your computer and educate yourself. Reading an MRI is definitely an art more so than a science.

Also, I've found that symptoms are strange and MRIs are not the end-all, be-all when it comes to new symptoms. I just had an MRI in April and had new symptoms appear shortly before it was done. I thought my MRI would be riddled with new lesions, but I've also been taking Tecfidera. There were no new lesions, but there was no denying the spasticity in my ribs, unbearable fatigue, and my loss of memory. It was actually more frustrating than comforting, because it just makes no sense! So, I totally understand your confusion.

If you do end up having MS, that confusion will stick with you, which is why it is essential to find a doctor you can work with and trust. You seem like the researcher type, like me, and if you feel that you know more than the doctor, it's time to move on. MS is already mystifying enough without having a clueless doctor! Either way, good luck at your appointment, and remeber to get a copy of your MRI! Let us know how it goes

Eva

[SNOOPY]

Hello Kacerpie and welcome to MSWorld

It sounds like a DX might not be in the cards for the first Neuro apt, however from everything I have read, it is better to start DMD a bit too early rather than a bit too late.

You might be putting the cart before the horse, as there is an assumption on your part that your Optic Neuritis means you do have MS. This very well may not be true (hopefully).

You can have ON and not have Multiple Sclerosis. I have had 2 friends as well as my own sister who have had ON, none of them had or have MS.

Best wishes!

[Kacerpie]

Thank you for the replies!

. Demyelination does not present as "space" around optic nerves, and there isn't a way to judge demyelination -- early or late -- by "space" around optic nerves. What did the ophthalmologist say about that? That's such a strange statement that I can't believe s/he wouldn't correct it if it came up in conversation.

Funny you should say that. The ophthalmologist said with the comments on the MRI I shouldn't need a follow up with the neuro, but he would be more comfortable if I did. I could possibly be remembering some of the conversation we had incorrectly, however I am pretty sure it was along those lines. I will be getting my copy of the MRI on cd today and will come back and update with what it says, word for word.

First, without characteristic lesions on your MRI, there's no way you'll get a diagnosis at the first neuro appointment. Even if you had characteristic lesions, the diagnostic criteria for MS require that all other possible causes for the symptoms and lesions must be ruled out first. So your neuro would have to run some other tests to rule out other causes before making a diagnosis of MS. There's only one situation I know of in which a neuro might diagnose someone with MS at a first appointment, and you don't fit that situation.

The "early" you might have read about includes a condition called clinically isolated syndrome (CIS). But CIS is a condition in which the person meets all of the criteria for MS -- including central nervous system lesions on MRI, evidence of dissemination in space, and associated symptoms -- except that a diagnosis of CIS requires only one demyelinating "attack" and a diagnosis of MS requires two attacks. The only exception for CIS is dissemination in time -- every other criterion for MS must be met in order for you to get a diagnosis of CIS and the option of starting on a DMD.

This is good info. I guess I was assuming with what the radiologist said in the report it would fall under the CIS label

. In MS, "attacks" must be characteristic of a demyelinating event.

If there is a diagnosis of ON, and the MRI is clean, because of the elavated chance of developing MS do they have you come back yearly or every few years to get new MRIs to keep an eye on it (no pun intended)?

. Like all general doctors and specialists at Kaiser, Kaiser has a range of excellent doctors to average to terrible, bordering on incompetent. So how well you do with a Kaiser neuro depends on where in the country you live and which neuro you're coincidentally assigned to. It's true of Kaiser neuros and its true of Kaiser ophthalmologists and it's true of every other specialist . I've been with Kaiser for almost 20 years. Some of the worst doctors I've ever had have been at Kaiser (unfortunately, several of them were neuros, including their local "MS specialist"), and some of the best doctors I've ever had have been at Kaiser.

Kaiser, as a medical entity, follows diagnostic protocols, so it's doubtful that a Kaiser neuro would diagnose you with MS or even CIS if you don't meet the diagnostic criteria. That means no DMD without a diagnosis. If the general neuros don't seem able to competently handle your case, then you can ask for a referral out of your region or out of your network to a neuro more experienced with MS. But you'll have to go through the preliminary steps first.

This really is truly helpful, and I would love to speak with you more regarding your experiance with Kaiser. This is the first year I have gone with the HMO insurance, and our open enrollment with work is coming up, so I have been trying to figure out if Ill stay with Kaiser, or go back to a PPO and take advantage of some of the outside resources. I like in Orange County CA, so if needed I would have access to USC, UCI, UCLA and 1 more additional office that the MS Society has rated a center for comprehensive care.

[Kacerpie]

Thank you for the reply.

Hi Kacie,

The previous postee handled the technical side of things pretty well, but I thought I'd add some things from my experience. This time last year I was going through the diagnosis process, which is frightening and stressful, as you know. I, too, had ON as a catalyst symptom. It took months before I was officially diagnosed. This was after an MRI (with lesions) and a positive lumbar puncture.

Something that is quite important with all the tests you'll be receiving is to get copies! I have all of my MRI's on CD from the imaging site. This is vital for you especially since you may change doctors. You can also look at these images on your computer and educate yourself. Reading an MRI is definitely an art more so than a science.

Also, I've found that symptoms are strange and MRIs are not the end-all, be-all when it comes to new symptoms. I just had an MRI in April and had new symptoms appear shortly before it was done. I thought my MRI would be riddled with new lesions, but I've also been taking Tecfidera. There were no new lesions, but there was no denying the spasticity in my ribs, unbearable fatigue, and my loss of memory. It was actually more frustrating than comforting, because it just makes no sense! So, I totally understand your confusion.

If you do end up having MS, that confusion will stick with you, which is why it is essential to find a doctor you can work with and trust. You seem like the researcher type, like me, and if you feel that you know more than the doctor, it's time to move on. MS is already mystifying enough without having a clueless doctor! Either way, good luck at your appointment, and remeber to get a copy of your MRI! Let us know how it goes

Eva

Thank you Eva, the confusion is the worst part. Because of only seeing the Ophthalmologist, I feel like I have been on my own with figuring this out. He was able to quote me stats and stuff, but when it comes to the real information, it seems it is somewhat out of his league.

I should be able to pick up my MRI cd today or tomorrow, which I think will be tremendously helpful. I will absolutely come back and post with the results.

Although I do want to know what is going on, a delay in dx wouldn't be world ending for me. My company has just announced they will be offering critical illness insurance, so depending on what that in tales, it might be something I can take advantage of in the future.

[Kacerpie]

MRI Results are in...

Hi Snoopy, I truly hope that is true.

I just picked up my MRI results, it says:

Mild, hazy edema and enhancement foci are seen in the right optic nerve,consistent with patient's history of optic neuritis. 2 faint subcentimeter Nonspecific hyperintense signal foci are seen primarily in the left frontalopariental white matter. Possibilities include, but are not limited to prominent CSF spaces, early small vessel ischemic disease, demyelinating process. Correlate with patients neurological history.

When looking at the images, there is mention of T1 lesions. Can T1 lesions turn into T2 lesions?

[Fed Up]

x

Kacerpie, I missed your age? Keep doing what you are!

This article from the National M.S. Society explains some of your concerns and due to the McDonald criteria(by Kaiser standards) you'll clearly have to have a "second event" within a year AND have difficulty walking (even though some have 'walking' MS)! Your issues are very interesting and I am glad to read you are having the correct things done, asap!

This article answers a few of your questions...National MS Society:
http://www.nationalmssociety.org/Sym...gnosing-Tools#

Timely and accurate diagnosis

There are many possible causes of neurological symptoms. When MS is considered as a potential diagnosis, other causes must be excluded — through the tools and tests outlined below — before an MS diagnosis is considered definitive. While this process of exclusion may be very rapid for some individuals, it can take a much longer time — with repeat testing — for others. Making the diagnosis of MS as quickly and accurately as possible is important for several reasons:

People who are living with frightening and uncomfortable symptoms want and need to know the reason for their discomfort. Getting the diagnosis allows them to begin the adjustment process and relieves them of worries about other diseases such as cancer.
Since we now know that permanent neurologic damage can occur even in the earliest stages of MS, it is important to confirm the diagnosis so that the appropriate treatment(s) can be initiated as early in the disease process as possible.

Optical coherence tomography

Optical coherence tomography (OCT) is a relatively new, non-invasive and painless imaging tool for viewing retinal structures at the back of the eye. Although the optic nerve is often a target of MS disease activity — leading to episodes of optic neuritis — it cannot be easily seen. Doctors can use OCT to see the condition of the retinal nerve (which carries visual information before it leaves the back of the eye) after an episode of optic neuritis. Because the retinal nerve has no myelin covering, OCT images provide important information about the health of the nerve itself.

OCT studies have shown that the retinal nerve fiber layer is different in people with MS than in people without MS, even when there is no history of optic neuritis — making OCT a useful tool for learning more about the pathology of optic neuritis and of MS, and for gathering additional evidence of disease activity when the diagnosis of MS is suspected.
Criteria for a diagnosis of MS

At this time, there are no symptoms, physical findings or laboratory tests that can — by themselves — determine if a person has MS. The doctor uses several strategies to determine if a person meets the MS diagnostic criteria. In order to make a diagnosis of MS, the physician must:

Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND
Find evidence that the damage occurred at two different points in time AND
Rule out all other possible diagnoses.

In 2001, the International Panel on the Diagnosis of Multiple Sclerosis updated the criteria to include specific guidelines for using magnetic resonance imaging (MRI), cerebrospinal fluid (CSF) analysis, and visual evoked potentials (EP) to speed the diagnostic process. These tests can be used to look for a second area of damage in a person who has experienced only one relapse (also called an attack or exacerbation) of MS-like symptoms — referred to as a clinically-isolated syndrome (CIS). A person with CIS may or may not go on to develop MS. The criteria (now referred to as The Revised McDonald Criteria) were further revised in 2005 and again in 2010 to make the process even easier and more efficient.

That is just a portion of the article...please read it.

Please remember this- during your 'process' of being diagnosed: MS IS A DISEASE OF EXCLUSIONS and several other disease's mimic it. Before a firm diagnosis is made, they will proceed to rule out any other disease's.

Kaiser Los Angeles has an excellent MS specialist named: Dr. Annette Langers and an associate there in Los Angeles, as well.
Kaiser Fontana should have an MS specialist by the end of this year (2015).

Do you have an appointment with a Rheumotologist or physical medicine? Probably ought to just make an appointment with psychiatric services now--if you don't need one now, you will by the time you've managed to see every specialist! I've spoken to employees there and others going through 'the process'--- Kaiser will make absolutely certain you aren't a "psycho" looking for attention with disease. Just ignore that and nip it in the bud by going to their mental health, in advance--it helps speed up the process and gives you the personal one to one support you'll need during this process.

With Kaiser you will need to be very pro-active in finding out which and what kind of doctors you need to see. Like... Pulmonary, Cardiac, Gyno-Urologist, Allergist, Neurology, GI, Ortho, Podiatry and probably a few I've forgotten BE CERTAIN you have a primary that 'cares' about you and wants to find the problem to make you feel better! Just an example: It took 5 years to isolate a painful muscle in my abdomen and a few GI diagnostic proceedures--MRI's (at $160. copay each), etc. Then the GI doc injected the muscle with Lidocaine 4 months ago and it hasn't hurt since--AFter 5 years!!!

BE PATIENT
Kaiser Docs don't have the time with a patient to really get all the information they need from you in one visit or time to review your previous records, it'll be up to you to report all significant information that isn't in your medical records. Keep a log of symptoms, etc. When you have symptoms and when it is in remission: You may need to present in Urgent Care or ER , many times, to DOCUMENT your symptoms-while you are having them. Otherwise-it doesn't count, they'll think you are lying, it is cheaper to treat someone that is psycho than a real disease.

Former oncologist claims Kaiser Permanente pushed profits over patient care, files $7 million lawsuit

Here is a case recently filed in San Mateo in open Superior Court. Let's hope that this family is not forced into arbitration where this information will not be allowed to become public knowledge and where true justice just might take place:

Kaiser has a facility in Pasadena with more lawyers in one place than Congress. It's almost impossible to sue Kaiser and easier to make sure you are getting the proper care. Kasier has MANY excellent doctors, find them and don't be afraid to change.

You may have an expensive disease and with Kaiser's M.D.'s essentially have an interest in keeping costs down, for their own income, it is a non-profit hospital system and most docs are 'shareholders'. IMHO, it seems many doctors need their jobs and retirement and 'afraid' to stand up for a patient that just doesn't quite fit their "criteria" for a disease OR, not enough time to find one.

If you keep a log of symptoms, etc. will make it easier to focus on what you need when you get into a specialist's office that is being so rushed by an impossible schedule. If your doctor at kaiser seems overburdened with patients and not enough time, you might want to call the department Director and try to schedule a visit longer than 'normal.' They will do that with persistence and if you can do it without calling membership services, that is best. But, don't be afraid to call membership services if you feel ignored or mis-treated. Often that is the only way they know their doctors are being over-worked and not given the proper amount of time with specific patients. deserve! The "process" will wear an ailing person completely out.

If you don't have a significant event within a year of the initial documented one, "probable M.S." will be your situation and that is not a diagnosis. Just be persistent and it is my hope that you'll never have any more issues.

If I were you I would approach Kaiser with the: "WThat is wrong with me!" Don't let them send you to specialist's to Rule Out M.S, because that is the one 'singular' issue that the neurologists will focus on and not look for what is actually wrong with you! IF it isn't M.S. they won't be looking for what it actually is. JUST REPORT YOUR SPECIFIC SYMPTOMS, CONCISELY. You may only have minutes to do it, due to scheduling.

Good luck to you and please keep us posted. fed

[jreagan70]

I just picked up my MRI results, it says:

Mild, hazy edema and enhancement foci are seen in the right optic nerve,consistent with patient's history of optic neuritis. 2 faint subcentimeter Nonspecific hyperintense signal foci are seen primarily in the left frontalopariental white matter. Possibilities include, but are not limited to prominent CSF spaces, early small vessel ischemic disease, demyelinating process. Correlate with patients neurological history.

When looking at the images, there is mention of T1 lesions. Can T1 lesions turn into T2 lesions?

Thanks for posting your radiology report. I'm glad you did because (as I suspected) it doesn't say anything at all like you thought it did. Nothing about your optic nerves having "space around" them ("above average" or otherwise), and nothing about "beginning stages" of demyelination.

The only thing the report says about your optic nerves is that your right optic nerve showed enhancement foci. "Foci" is the plural of the word "focus." A "focus" is an area of concentrated electromagnetic signal intensity that indicates an abnormality. "Enhancement" means that the nerve tissue in the area absorbed the contrast medium (dye), which indicates active inflammation. That's consistent with recent optic neuritis, as your radiology report said. Those enhancement foci are lesions.

Those "2 faint subcentimeter Nonspecific hyperintense signal foci [are] seen primarily in the left frontalopariental white matter" are nonspecific brain lesions. Nonspecific means that they don't look like lesions belonging to conditions that do tend to to specific-looking, characteristic lesions (like MS) and do resemble lesions that could belong to several different conditions for which the lesions look the same, nonspecific way. Some demyelination can look nonspecific, so that's why your radiology report says, "Possibilities include, but are not limited to prominent CSF spaces, early small vessel ischemic disease, demyelinating process" with the standard statement, "Correlate with patients neurological history" to try to narrow down the possibilities by means of more information.

Regarding lesions... This gets a little complicated. T1 and T2 aren't types of lesions per se. T1 and T2 are electromagnetic sequences that are run as part of doing MRIs that cause lesions to show up different ways, depending on their characteristics. Some people might argue that they are different types of lesions if they show up differently depending on what kind of electromagnetic signal they're exposed to, but the semantics and the "science" behind it all aren't quite right when looked at that way.

Lesions that show up in a T1 sequence tend to be older areas of damage that include cell damage and death rather than "just" demyelination, which shows up in a T2 sequence. So in that way it might be argued that lesions that show up in a T2 sequence can progress into lesions that show up in a T1 sequence. But again, that's not really the terminology and semantics used in that line of logic. It might be easier to say that superficial damage can progress later into more serious damage. But for you, as someone else said, is putting the cart before the horse and getting farther into the facts and theory of MS than your current situation warrants.

I'll have more to say about Kaiser later. But for now, if you'd rather not spend a lot of time and energy on the act of navigating the Kaiser HMO system, you might do better to switch back to a PPO plan, where you can pick where you go for care.

[Kacerpie]

Kacerpie, I missed your age? Keep doing what you are!

fed

Hi Fed Up, I never mentioned my age, but I am 31. It seems to me you have had a less than stellar experience with Kaiser? As I stated earlier, open enrollment at work will be held Oct 26-Nov 6, so I do have the option of sticking with my Kaiser HMO, or going back to Blue Cross/Blue Shield PPO. Although I know without knowing the specifics of my health plans it would be hard to recommend which way to go, I am genuinely interested in peoples experience with both through out the entire process.

The only specialist I have seen thus far are the ophthalmologist (who was in close contact with the neuro-ophthalmologist located at a different Kaiser campus), and the upcoming apt with Dr Saghafi and a follow up with Dr Hagh (Who I have been told is the MS Specialist). Both neuro were recommended by the nurses at the infusion center in regards to the patients that were happy with their MS treatment.

[Kacerpie]

Thanks for posting your radiology report. I'm glad you did because (as I suspected) it doesn't say anything at all like you thought it did. Nothing about your optic nerves having "space around" them ("above average" or otherwise), and nothing about "beginning stages" of demyelination.

Yes, thank you for coming back and checking in! I think the dr that gave me the results probably used more layman's terms, and I took that and instead of word for word what he said paraphrased with terminology that makes sense to me.

I do agree I am putting the cart before the horse. I don't do well in the land of unknown, I need to have a path and direction. Although I am not the bread winner in the family, I am the one that carries all the benefits, retirement, etc so if something does happen to me I don't want to be caught off guard as it won't just effect me but also my husband and 4 kids.

From the information I'm getting (my mom happens to be a nurse and is helping me dis-cipher some of the med speak, however her only experience with neurology has been patients in ICU that come in with strokes and such) it does seem like although this could be something, it very likely be nothing more than "keep your eye on this" warning and make sure to follow up as advised by the drs.

[jreagan70]

it does seem like although this could be something, it very likely be nothing more than "keep your eye on this" warning and make sure to follow up as advised by the drs.

Hi Kacerpie:

That may be true, but is that enough for you to use to decide whether to stay with Kaiser or go back to a PPO?

The only specialist I have seen thus far are the ophthalmologist (who was in close contact with the neuro-ophthalmologist located at a different Kaiser campus), and the upcoming apt with Dr Saghafi and a follow up with Dr Hagh (Who I have been told is the MS Specialist). Both neuro were recommended by the nurses at the infusion center in regards to the patients that were happy with their MS treatment.

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.

There are also some ophthalmologists in Orange County that I refuse to see again. Which reminds me, I have a few things to say about what your Kaiser ophthalmologist told you.

And I had to change primary docs years ago when it became clear that the one I was seeing didn't want to have anything to do with a patient with MS. The one I've been seeing since then is fine.

I also said that some of the best doctors I've ever had have been at Kaiser. One of them is the neuro-ophthalmologist you referred to. But unless you develop something unusual, you won't be seeing him. He's overworked and doesn't take routine cases.

So if you don't mind learning how to work within the Kaiser HMO system, you can move around and find good doctors, even though they may not be local to you. The downside is that it isn't always easy to do.

You said that if you go back to a PPO, you'll have access to USC, UCI and UCLA. I've never read or heard that UCI has an outstanding MS center. I have been to USC's MS center and had good experiences each time. The really good neuro I was seeing isn't there anymore (he was the head of the MS clinic for awhile), but overall the center was fine for the few times I was there, and it has a good reputation. Considering that I now have to drive into LA county to see a neuro at Kaiser, I'd say that the drive to USC is comparable. The process of becoming a patient there and working within their system may or may not be easier than at Kaiser.

I don't know how much that helps you in deciding whether to stay with Kaiser or go back to a PPO. As for the Kaiser neuros, you'll just have to see them yourself to decide. Is that going to happen before you have to make your insurance decision?

[Kacerpie]

OC Med Care

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.

I also said that some of the best doctors I've ever had have been at Kaiser. One of them is the neuro-ophthalmologist you referred to. But unless you develop something unusual, you won't be seeing him. He's overworked and doesn't take routine cases.

So if you don't mind learning how to work within the Kaiser HMO system, you can move around and find good doctors, even though they may not be local to you. The downside is that it isn't always easy to do.

I don't know how much that helps you in deciding whether to stay with Kaiser or go back to a PPO. As for the Kaiser neuros, you'll just have to see them yourself to decide. Is that going to happen before you have to make your insurance decision?

Thank you! That is a huge help actually. We just found out our enrollment goes from Oct 28-Nov 6, so I will have been able to see both neuros before the new packets is due. In fact when I was trying to make the apt with Dr Hagh, I was told she would be out of the office regularly doing MS training in LA.

Have you had any experience with the Fullerton Neurology and Headache Center? If I do switch back to a PPO it would be through St. Jude, and I do have to say, I really have loved all the Dr.s I have had through them (from 12-30), however cost will always be an issue.

After thinking everything over, and the MRI being favorable, I'm planning on sitting down with an insurance specialist and get the worse case (as if I was DX) out of pocket estimate for both and go from there. I think the biggest issue right now is not knowing the chances of it being something more than what it currently is, and the chances of it developing into something in the future.

It sounds like you would be a great resource, as your local and been navigating the system. I kind of wish I would have run into you in real life!

[JerryD]

I read a few of the responses and I am amazed at the depth of understanding of the responders. I want to tell you that it took me 5 years to find an MS 'specialist' neurologist.
And it is the best search that I could have made. I suggest that any and all medical consults that you have should be done with doctors that treat other MS patients. I just found a therapist that 'specializes' in treating MS patients. I feel very confident that this therapist is a 'keeper' for my 'team' !

[jreagan70]

Hi Kacerpie:

I don't have any experience with the Fullerton Neurology and Headache Center. But if you've been happy with the St. Jude system, that could be a good indication that your experience in being monitored and then possibly being diagnosed and treated for a chronic condition might be good.

In fact when I was trying to make the apt with Dr Hagh, I was told she would be out of the office regularly doing MS training in LA.

That brings up another issue. When may people -- and apparently the majority of members on this forum -- speak of an "MS specialist," they're referring to a neurologist who 1) sees mostly or exclusively MS patients, and 2) has has more than average experience and knowledge in diagnosing and treating MS. "MS specialist" is a term that seems to be applied by other people, including medical professionals, to a neurologist and is not used by the neurologists to describe themselves. The neurologists do, though, note that they have a special interest in MS and/or devote some or all of their practice to MS.

As an aside here, some people have confused the term "MS specialist" to be some kind of special medical/legal designation that only neurologists with special certifications can use. That is not true. The Consortium of MS Centers does have a certification program for neurologists in the diagnosis and treatment of MS, but it's a voluntary certification that isn't connected in any way to certifications by the American Board of Medical Specialties, and it isn't trademarked, nor does it have more than the usual legal significance.

When I referred to OC Kaiser's "MS specialist" in my earlier posts, I did use quotation marks to signify that she isn't a specialist by virtue of an exclusive practice or extra knowledge about MS. She might be called that because she'll see MS patients when the other neurologists don't really want to. She might also be called that because her peers don't know how un-special she is. If you go to her Kaiser website, her description of herself is that she's a general neurologist with interest in several areas, including MS. That itself should be enough to show that she doesn't claim any special knowledge.

In my experience with her, she didn't really appear to have any specialized experience, skill or knowledge about MS. It's interesting to me that she's out of the office getting "training" in MS. She's been the "MS specialist" for at least 15 years. In that time, the kind of neurologists most people think of as "MS specialists" would be participating in regular ongoing continuing education to stay current in their already above-average skills. They no longer go for regular "training." So the thought that, after 15 years she needs "training" underscores my experience with her that she really had no special knowledge, experience or skills with MS.

I get along fine with doctors with abrasive personalities as long as they're at least competent and trustworthy. I found her to be neither one. She may have changed. But as the saying goes, a leopard doesn't change its spots. You'll have to see for yourself and decide if it's something you can live with for another year if your symptoms turn into more than just something to watch.