My Experiance with Kaiser Permanente and Multiple Sclerosis

kaiser permanente ms multiple sclerosis neurology

WARNING: The Matt writing this article is not a happy Matt. ;^b

Everyone who has ever dealt with Kaiser Permanente will tell you that they either LOVE Kaiser or HATE Kaiser. We all have had different health situations and we all have had different experiences with those situations and Kaiser. I myself never really had a problem with Kaiser when it came to the basic, routine stuff. I mean, they have some pretty cool technological features that help get you in and out, just the way most people like it! That of course changed when I was diagnosed with Multiple Sclerosis… Funny, my family used to have United Health-care and then we had to switch to Kaiser… My mom had jokingly said “God forbid one of us get seriously sick or injured” when this happened. SURPRISE! MULTIPLE SCLEROSIS!

So what’s my beef with Kaiser your probably asking?  Well, let me make something clear. For the sake of this article I have to keep my criticism local: Kaiser RIVERSIDE – specifically the neurology department. I can’t apply my criticism to Kaiser as a whole as I have not been to every Kaiser Hospital in the US nor have I seen every Kaiser doctor so in order to be fair I have to keep it local.

Kaiser Riverside: Neurology Department – Not the best place to get help if you have Multiple Sclerosis.

The neurologists here all seem to have an ego larger then the actual building they work in… Any time I have mentioned things like dieting or exercise to anyone in this department I have received the same response: A chuckle followed by “Well there really is no evidence that helps treat MS at all.” Anytime I have mentioned wanting to see an MS specials I again receive the SAME answer from everyone: A chuckle followed by “There’s no such thing as an MS specialist, ALL Kaiser neurologists are MS specialists, there is no certificate out there stating you are an MS specialist”. That’s funny… I know of a couple neurologists out there who claim to be MS specialists at MS centers who would probably beg to differ… They might not have some fancy piece of paper but they definitely know a hell of a lot more about MS then a regular ol’ Kaiser neurologist.

So  I am constantly battling with the doctors at Kaiser Riverside for tests they don’t think are necessary, alternative treatments that either “don’t exist” or “probably don’t work because there is no evidence that they do”, referrals, everything! One doctor wants me on nothing but steroids and another doctors wants me on… NOTHING! It’s been almost a year and I JUST had my second MRI done today and I had to fight for that as well… Everyone told me I have a really aggressive case of MS yet no one wants to do any kind of routine check ups, MRI’s, or blood tests… No one wants to send me to a dietitian, physical therapist, or psychologist. Nope, the Prednisone will fix everything! Because Prednisone makes Kaiser money and Dieting doesn’t… That’s REALLY how my family and I feel when we talk to these doctors, they just want our money… They are pushing pills for the pharmaceutical companies… Pills don’t fix EVERYTHING…. A lot of pills cause MORE problems but no worries, there are pills for those problems too! Money, Money, Money!

I finally was getting fed up with all this and wrote an email to my last neurologist who had told me that I would probably not get any better but I was well enough to go back to work because I could stand on one leg and touch my finger from my nose to his finger. This same doctor was talking all sorts of “mess” on the MS Specialist at Loma Linda and told me that if I did end up seeing the Specialist, which would be a waste of time, not to let him treat me because basically he didn’t want to work with another neurologist on the same patient… Might get confusing… Um… Your a NEUROLOGIST, if working with another doctor might confuse you, I’m a little concerned about you trying to treat an autoimmune disease… This is the same guy who couldn’t properly define the difference between RRMS and SPMS…. Anyways, here is the email I sent him followed by his response and then my responses…


—– Message —–
From: Matt A. G.
Sent: 5/12/1
To: S. S. G. DO
Subject: MS Symptoms


Just thought I would email you because my symptoms are still slowly getting worse especially since I have been decreasing my Prednisone (or so I think). What is your advice? There has to be something I can do beside NOTHING because obviously letting it run it’s course is not going to get me anywhere… I’m growing really frustrated as I feel beyond helpless. I had one month of near 100% health where I was out hiking, jumping from rock to rock, and now I have to watch my step at the curb… I refuse to believe that this is it. What are my treatment options besides Tysabri? I’m not looking for the typical textbook remedy, I would like to know what options are out there for taking care of the kinds of problems I have. I have been on both ends of the MS spectrum, HORRIBLE HEALTH and GREAT HEALTH, now I’m stuck in the middle and not really moving anywhere and I can’t stand it… Thankyou.

—– Message —–
RE: MS Symptoms

To: Matt A. G.
From: Nurse
Received: 05/16/2011

Dear Matthew,

Thank you for your email.

Your provider reviewed your message and attached below is the response:

G., S. S. (D.O.) 5/16/11 08:14 AM Signed

Patient needs to f/u with Neurology. Thanks.


On behalf of _________________ DO, OSTEOPATHIC DOCTOR
Moreno Valley CA 92553-3116

May is National Hypertension awareness month. Do you know your blood pressure?
Some recommendations to lower your blood pressure are:
Lose weight if you’re overweight
Walk 30 minutes, 4 days a week
Eat less salt and saturated fat
If you have hypertension, take your medications regularly as prescribed by your doctor.


Let me stop right here for a second… I emailed the neurology department asking for advice and their advice was to follow up wit the neurology department…. Um… Yeah…

Now at first I didn’t see the highlighted part of the message, it looked as though they had just copied and pasted some National Hypertension awareness month memo so I was fairly unhappy… Fairly unhappy being the nicest way I can describe my feelings at the moment. So here was my response followed by my second response I sent after I realized my neurologist had in fact taken the time to sneak an incomplete sentence in there. And yes, I know, I sound like a jerk, that was my goal, it was an “angry letter” haha…


—– Message —–
From: Matt A. G.
Sent: 5/16/11
To: S. S. G. DO
Subject: Really?

 I just need some clarification as to how your response to my last email had ANY relevance to what I was asking about?

Perhaps your just too busy to actually read my email and give me an actual response so allow me to make your job a tad easier.

I will be tapering off the Prednisone as I had already intended to do before I saw you. I will be off all medications except Copaxone. I will not try Tysabri. I would like to try LDN (Low Dose Naltrexone) for a few months while focusing on dieting and exercise something I have also been told by your department has no relevance in the treatment of MS. I would also like a referral to a physical therapist and a psychologist who can better recognize any issues I may be having and better help me deal with them.

I’m aware that the course of treatment I am pursuing does not make Kaiser much money however my soul interest is in healing my body not generating profits.

I’ll also be contacting member services regarding my experience with this dept. TY

—– Message —–
From: Matt A. G.
Sent: 5/16/11
To: S. S. G. DO
Subject: Really?

“Patient needs to follow up with Neurology”

So short I didn’t even see it.

Anyways, I was under the impression that YOU WERE part of neurology and that I DID follow up with you or do you simply mean that I need to make an APPOINTMENT so you can get PAID to help me as opposed to sending me a quick email which would take maybe 5 minutes of your unpaid time.

The less time of mine that you waste the less time of yours I will waste. Thank you.


Now I know I came off strong but that’s because I have gone back and forward with other doctors in this same department for far too long who were pulling the same exact crap with me… I am done with that. I want to get better and I’m not going to let someone’s ego get in my way. I have NO intentions of seeing that last doctor again but I wanted him to know that I’m serious about my health and that I’m not going to blindly do what he says without doing my own research or taking an interest in my treatment. This is MY DISEASE and MY BODY that will be with me for all of MY LIFE. NO ONE cares about me more then ME, simple fact of life that applies to EVERYONE, and so this is how I HAVE to be: aggressive.

Eventually I will find a doctor who actually WANTS to help me instead of rob me of my money but until then Matt is not going to play Mr. Nice Guy with his doctors anymore… I have wasted far too much time this year with these kaiser Neurologist (in Riverside) who seem to think they are two steps below God so it’s time to kick it into fifth gear and take care of business before their pride results in permanent damage to my Central Nervous System.I will no longer take no for an answer, I won’t.

If you have had a bad experience with Kaiser (So-Cal) you can CLICK HERE to fill out an official complaint form.I will be sending mine in for sure! Doctors need to start being doctors!

39 Responses to My Experiance with Kaiser Permanente and Multiple Sclerosis

  1. Brad says:


    You deserve better. And I pray you get better.

  2. Ben says:

    "I would like to try LDN (Low Dose Naltrexone) for a few months while -focusing on dieting and exercise something I have also been told by YOUR department (aka "experts" on the brain overall and how it should work) has NO relevance in the treatment of MS."

    Yea I did a little editing on the quote. Even though it really sucks to read that, it reminded me of a small PDF that the company who makes Copaxone (Shared Solutions) sent me a while back. Basically it talked about how one would want to keep their immune system healthy overall even with MS, and it mentioned the exercise, sleep, stress, etc. Mostly simple things but still…

    Even though I wouldn't be surprised if you haven't already, but I wouldn't be afraid to possibly look around for 2nd opinions from other neurologists/people outside of Kaiser about some of the issues you've been dealing with even if it's maybe just a primary care doctor or something… I don't know how it is in So. Cal (I'm in the Chicago area myself), but you can probably/hopefully find someone/something that can help you at least get moving in a sense without just wanting to throw more pills at it. Someone who isn't afraid to say "there are pills we can give for that….. but is it really worth taking the pills for it or can you get by without?" (I do have somewhat of a story behind that, but I won't go into it)

  3. Matt Allen G says:

    And that's what I WANT, so I think I'm going to call Loma Linda up and just ask to see ANY neurologist they have avilable before my referal expires just so I can get a second opinion from someone outside of Kaiser like you are saying. I just had another MRI today and the results should be available in about a week so I'm going to order those for myself so I can take them to another doctor, at this point, I can review my MRI just the same as my current neurologist… I know that's kind of bold but I really do feel that way sadly… Since my doctors don't want to spend time with me I have to spend time with the BOOKS and learn all that I can on my own…

  4. Jack says:

    I am sorry to hear of your frustration. I understand how you feel, and have been in the same situation.

    My neurologist doesn't give much credence to the "alternative" methods I use to manage my Multiple Sclerosis. In addition to taking Copaxone (as you do), I frequently excercise, follow a strict diet (no dairy, gluten, or alcohol), and most importantly manage my stress levels through maintaining a positive attitude.

    I gained my knowledge of these additional treatment methods by reading and working with fellow MS patients. Doctors did not teach me these things.

    Feel free to follow me on twitter @ActiveWithMS
    Hang in there.

  5. Matt Allen G says:

    You brought up a funny point… I would say 95% of what I know I actually learned from other MS patients or from my own personal research… That 5% I am giving to doctors is actually rather generous…

    I don't use twitter too too much but that's mostly because I don't fully know how it works lol! Ill follow you for sur ethough!


  6. It's not a huge help to you but here in UK I am lucky my local hospital Neurology Dept has a variety of MS Specialists – doctors, nurses etc. I benefit from Physiotherapist supported exercise at a neuro session in local disabled living gym, I have seen Continence Advisory Nurse and MS Specialist nurse led Bladder Clinic. Then there are (free) publications from the MS Trust and info from MS Society plus a wealth of online and telephone support/info and I'm a member of a young MSers group.

    Seek out info and support wherever you can find it. Online is a good place to go – blogs, Twitter (it's not so difficult, give it a go), MS Specialist websites.

    Good luck

  7. Matt Allen G says:

    I wish I had all that available to me, you would think in the US we would!

    If you dont mind, what is the young ms group your part of??


  8. Melinda says:

    You had an MRI? Yeah team! That's a start on getting a handle on these lackadaisical doctors. Maybe when they see the activity they will get to work. (Am I hoping for too much?) Be persistant and you will prevail.

  9. Matt Allen G says:

    Well we will see after the nasty email I sent out haha but I plan on taking that MRI on a disk to another neuro somewhere else hahaha!

  10. Willowtree says:

    Mercy, I feel for you so much. I just don't understand…
    I think they need to round up all of the sensible drs, not the ego drs – just the sensible ones that are capable of saying – you know what – I have no idea, but Im either going to 1) work really hard to get an idea or 2) hook you up with someone who does have an idea – because I have no friggin idea, and make those drs available to us :-).
    Geeze, I hope you get a dr who cares soon. The people at LL should be more willing to help with information on diet and such you think? I know the church they are associated with are really big on diet and natural remedies. I hope you can find someone who can help, I mean really actually help. Im pretty sure I need an MS specialist (they do exist!), but Im so petrified of leaving my Neuro, because after 5 years, she finally "gets" me (a little) and I dont want to have to start all over again. Ill have to though won't I? Bleh, I dont even want to think about it. I do hope you get a solid dr soon.

  11. Matt Allen G says:

    You can't see a second neuro without leaving the first if the second is a "specialist"?

    But yeah Kaiser doctors are just worry about loosing their patients to other doctors because that mean they personally loose money haha so idk…

  12. Anonymous says:

    My son was just diagnosed with MS. He is 31. He was thinking of changing to Kaiser. He lives in Ontario, CA. Maybe Kaiser is a bad idea. We don't know where to start. We are planning to make an appointment at UCLA and at UCI. Does anyone know if those people will be helpful or useless? I don't want to waste money or time. My son and his wife both work full time.

    • Anonymous says:

      Stay AWAY from Kaiser! They want you dead. (Its more cost effective than if your ill and need tx) ie: speaking from the Los Angeles, Harbor City, Long Beach areas as I have tried them all.
      Most positive reviews are from people who have not needed extensive care or have been in the system long enough to know who the few good doctors are. By the time you figure out the good ones, and get on their 6 month wait list, years can go by.

  13. Matt Allen G says:

    Dont do Kaiser! I have seen pretty much all the Kaiser neurologists in the Ontario area, they are all a joke, a wikipedia knowledge is more vast than what they have to offer, stay away!

  14. Anonymous says:

    It's been 21 years and I was originally diagnosed in that same facility. I got a spinal tap and told to leave and go to pharmacy. I got extreme headaches and had to live on the floor for two weeks. Dr told me " you MS patients are a wast of time cause I cant fix you". Still remember what he said clear as it was yesterday. LA kaiser sucks and now that I am in San Diego its better but sucks. Learn how to use the system. They have screwed up countless times. Hospital had the wrong IV, cauterization in hospital was full and went back into bladder causing infection…. I got stories and stories just learn the system and NEVER relay on Dr. Be your own care and tell them what you want.

  15. Matt Allen G says:

    Oh I have got there for sure, I do what I know works for ME. Luckily I just found an awesome doctor who is passionate about MS, see him speak tomorrow, cant wait!

  16. Matt, I have MS and live in OC, but I used to live in Riverside too. I completely agree with about their massive egos. They much prefer to talk over me than to actually listen!

    I must ask about your last comment regarding the "passionate MS Dr". Who is he? Mine six and I've barely left the house these last 3 months due to my most recent exacerbation which brought back the seizures, a bunch of spasticity, and anxiety that I have never experienced before.

    if you found a Kaiser neuro that is decent, PLEASE SHARE!!

  17. Matt Allen G says:

    I CAN NOT recall the doctors name, I am on my third NETWORK and finally found one I like!

  18. Anonymous says:

    Thanks for the info on kaiser riverside. I was going to switch to them. I'm not now.

  19. Matt Allen G says:

    Good lol, I have only met those who have had bad experiences there, never good :O

  20. Anonymous says:

    These morons wont take my daughter in for an appointment even though she has thrown up all day (10 times.) I can't even get someone to give me medical guidance. As a first time parent, my only go to at this point is the internet…..BRAVO KAISER BRAVO!

  21. I am a Kaiser Riverside patient; diagnosed in December. I had an appointment with my Neuro on Thursday (Dr Higuchi) and left crying with an appointment to see someone else… a Dr. Vanpetten, I believe. It seems you and I are having identical experiences. Ugh!
    Stay strong.


    • Anonymous says:

      I personally am one of Dr. Van Petten's patients and I can't get her to be serious about my symptoms or treatment. Kaiser is a big joke. I am trying to switch medical coverage so that I can go to Riverside Medical Clinic. One of the best Neurologists that specialize in MS is there. His name is Dr. Bailey. I have an aunt with MS that is one of his patients and I have attended a multitude of seminars about MS that he had. He is an amazing man who is dedicated to helping his patients deal with this disease. They even offered to look at my MRI's to see what Kaiser isn't telling me.

  22. I think all Kaiser doctors are the same! I was diagnose with a gallbladder polyps. My primary doctor answer all my concerns and I was sent to see a surgeon. I was told by my doctor that it's better to take out before it becomes cancerous or develop complications. I went to see the surgeon who does gallbladder removal. As this surgeon looks at my ultrasound, he denies my surgery and I ask him why. The surgeon just replies "your ployps is so small and there is no seriousness in taking your whole gallbladder."

    My own doctor is shock to why I was denied a surgery. My doctor had to ask another surgeon to see if it was actually necessary to remove my gallbladder and she got the same response. My doctor knew my family history of cancer because my mom was diagnose with breast cancer but my doctor couldn't do anything about it. The only thing my doctor and I can do was monitor my ploys if it grows. Nice to know, I have to wait till my condition gets worst!!!

    I feel like certain doctors need to learn how to socialize with patients and see it from their point of view. I had to see a medical lawyer if this was okay and I have been advice if my condition gets serious and the kaiser can be reliable because they could have prevent it. My medical lawyer advice me to change my health care provider but I can't because my work is only insured with kaiser.

  23. Matt Allen G says:

    Eileen, I saw both them, other way around for me, both… sucked… Van Patten just likes to pump you with roids….


    Wow, Kaiser just… yeah….
    All about patching it up, dont fix the pipe until it bursts… I would be so…. mad? There must be a better word…. Well, I am sorry your hands are tied with Kaiser, good luck to you!

  24. Matt Allen G says:

    Anonymous – Oh, and yeah, the internet is just as helpful as Kaiser, only difference is you cant print out a prescription, seriously, that is the ONLY difference…

  25. Anonymous says:

    I agree, Kaiser has the worst Dr's in the world.

  26. Anonymous says:

    Hi! Sorry for your frustration. Woodland Hills Kiaser is no better. I have been fighting the neurology department for a year. I feel like I have been through a war. First neurologist stuck me on Topomax. Did an MRI, which showed white matter in various areas. He did not offer to do any further testing and said he couldn't help me any further. Second neurologist did do EMG. EMG came back negative so told me it was all in my head. He did not help with any of my symptoms or refer me to anyone else. I craftily pushed my way literally through several other departments to get a diagnosis for several of my symptoms. I am having surgery through OB/GYN to help with one symptom. If I hadn't forced the issue they would still all be telling me it is in my head. Many symptoms have got worse. Now have confirmed Drop Foot, and third neurologist finally agreed the MRI was abnormal. They bungled my Spinal Tap and contaminated it, but possible signs of MS. Third neurologist STILL SAYS IT IS IN MY HEAD. I have another MRI due in June. If they still say it is in my head I will go insane. That is more distressing than any of my symptoms. I intend to push for another neurology department somewhere else in the Kiaser system even if it means traveling. Any referrals would be great. I am also building a case for a formal complaint.

  27. Matt Allen G says:

    I have formally complained to Kaiser in several area each with several doctors, they just send you a letter back that says they are investigating then they never follow up. I got my DX at Kaiser RIVERSIDE, Dr. Van Patten, lousy doctor but hey, if she get's you a DX that is one step towards your goal. She is steroid happy though, so do one month tops and then say o more…

  28. Anonymous says:

    I personally am one of Dr. Van Petten's patients and I can't get her to be serious about my symptoms or treatment. Kaiser is a big joke. I am trying to switch medical coverage so that I can go to Riverside Medical Clinic. One of the best Neurologists that specialize in MS is there. His name is Dr. Bailey. I have an aunt with MS that is one of his patients and I have attended a multitude of seminars about MS that he had. He is an amazing man who is dedicated to helping his patients deal with this disease. They even offered to look at my MRI's to see what Kaiser isn't telling me.

  29. That is where I go and that is my doctor! Haha yes, he is great! GET IN THERE! Best thing that ever happened to me and my MS!

  30. Kristin says:

    I've had MS for over 20 years, and managed it mostly with natural meds and a neurologist on the side. Since I've been with Kaiser, I haven't had ONE MRI in five years. They have never addressed my MS, apparently, pretending that it doesn't exist. I tried to get Adderall (the only thing that works on my fatigue) and they immediately acted like I was a drug addict –though I have ONE refill for a year's time and just keep going to my rogue neurologist outside of Kaiser. Now it's time that I really went on one of the ABC drugs again, so I'll keep you posted. Most likely they will tell me that it's all in my head again. Yes, I know. Do a MRI and you'll see how it's all in my head. Cheapskates!

  31. wow…. have they done an MRI? LP? anything???

  32. I was diagnosed with MS in 2001 and have been absolutely blessed to have insurance which allowed me to have wonderful doctors in all departments including neurology (prior insurance was also an HMO). The only HMO offered by my husband's employer is Kaiser, however we were not concerned because we had heard such wonderful reports including from some of our own family members. Sadly, we have encountered some experiences and are seriously concerned about my medical care for the remainder of the 2014 year. My initial visit with neurology was pleasant however comments were made about "Kaiser does not use some of the meds you are on so we will be changing them". I had a problem with that statement because it was made without taking into account the fact that these medications were having a positive affect and working on my MS. Although I provided the transferred records (MRI's and reports) my neurologist to this day has not yet reviewed them. Early April I started experiencing an episode (I have Relapsing Remitting), contacted neurology but would not be scheduled an appointment, contacted and scheduled an appointment with my primary, he also requested followup with neurology and he emailed neurology. I followed up with a call to make the appointment but was still declined. That night I went to Emergency for the second time in two weeks. My husband contacted patient services and within two days we were contacted with an appointment in neurology. That appointment was this afternoon. My husband accompanied me because the vertigo is so bad. Doctor seemed slightly annoyed to meet him, but he stayed out of the way. We discussed the symptoms, she again stated she is going to change my medications once I am over this episode because she "discussed it with her colleagues and they agreed that they do not have any of their MS patients on this medication". My husband answered and stated we will have that discussion when I am in a better state. He also expressed concern about having his wife's medical care be handled in a "cookie cutter" form. One thing MS patients know is that our illness is different in each one of us and one treatment is not the cure for every patient. Today I was prescribed Prednisone for the vertigo. I suffered severe migraines for six weeks and vertigo, fatigue, now can't drive, have to hold on to my husband to walk = should have been allowed an appointment much sooner.

    The most disturbing point today however, throughout my numerous visits to neurologists in the past 13 years, today is the first time I did not receive ANY TYPE OF NEUROLOGICAL TESTING, nothing. With all the vertigo I am experiencing perhaps it was just obvious to the naked eye. Come November we will certainly be signing up for other insurance, it will have to be PTO for me. We will have to budget the expense, but I cannot afford to find myself needing medical help and simply being refused or possibly having my medications changed to others that will not have a positive affect. There is too much to loose.

  33. CMS Mommy says:

    Should I even bother with Kaiser about getting a prescription for Los Dose Naltrexone-LDN??? I'm with Southbay Kaiser and my neuro is a one sentence kind of guy. Primary doc said he could refer me to LA Kaiser for second opinion, but is it worth it. Should I just go out of network and pay on my own??

  34. CMS Mommy says:

    Should I bother with Kaiser at all for LDN…neuro doc is a one sentence kind of guy and primary said he can refer me to LA Kaiser (Im with southbay) for a second opinion. Should I just go out of network? Has anyone found anyone at Kaiser willing to prescribe LDN. I want control of how I manage this disease, I want my opinion heard and valued!

  35. Sharon Riggs says:

    Dr. Ali Makki at Loma Linda is GREAT. Might be worth paying out of pocket for him. Dr. Aratta in Newport is also great and has helped a lot of people with CCSVI and MS.

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