This Is MS Multiple Sclerosis Community: Knowledge & Support

O.K. -- So I had my second 3 month check-up with my Neuro on the 26th.

Uh,Where can I begin? I'll begin by saying that I didn't chose this man to be my Neuro, the hospital did, and he just stuck. I didn't like him to begin with, but I figured I could live with him since he was allowing me to order lab tests that I thought I needed (Lipid, and Hepatic panels..). I figured this flexibility would be useful in the future. I figured wrong. During this appointment I wanted to talk with him about NAB's to Rebif. I also asked about getting an MRI in July or August, after some hesitance he placed the order (I had reminded him that he promised to let me do this, only after that did he fill out the paper work), then I started on the subject of getting a test done to see if I had NAB's to Rebif. He immediately dismissed this. Almost with a snappy tone. I was rather surprised. I retorted that if I have NAB's my $1400/month medication won't be effective at all (as if it was in the first place?). He told me that even if you have NAB's Interferon treatment can still be effective, it just depends on the person, "the NAB test doesn't mean anything". THEN... He actually told me to stop reading up about MS and to "live my life, dont worry about it". I had confronted him on the last 2 appointments with many questions (ABX, etc...), both times he expedited the appt. I can't believe that he is not willing to discuss this information with me. This Thursday my appointment lasted 5.5 minutes. NO Joke. I waited 35 minutes just to talk to him. Needless to say I won't be back.

What disheartens me the most is that I think this is happening on a widespread basis. If so, it is not right. Doctors are paid VERY VERY well. You don't have to be a doctor to provide the service I typically receive from these so called doctors.

Sorry for the rant, but how many other people have experienced this sort of situation?

Brock


The title Neurologist should be changed to: "Person with MD that collects money from people and insurance companies". They are in it for the business, not the people (or at least most of them).

Brock,

I'm not going to stick up for neuros but like most things in life there are good and bad ones.

Being a neuro must be one of the grimmest jobs around - e.g. 'sorry Mr Smith you have ALS, Parkinsons, MS, Ataxia, Alzeimers etc etc'. And when the patient looks at the neuro - there's no 'take two of these and you'll be fine within a month' . How they must envy their colleagues in oncology who now have a good chance of saying 'you're clear of cancer etc etc'.

Neuros are probably the least expert of any medics because it's the brain - the most complex organ of them all. For almost any condition they deal with there is little known about the cause. Hopefully, we will see the day when neuros will say 'Mr Smith a knew drug for you to stop the progression of your MS and another to start some repair'. Then we might walk away from the neuros office and think that was worth the money.

Ian

Sorry to hear it, Brock.
I have had a much better experience with my neuro. I'd say he is willing to be fairly proactive, but I do think it helps that I prod him. For example: he ordered a repeat MRI at 6 months of Rebif treatment which showed no change. A few months later I thought I was experiencing some very mild but new symptoms so asked him about NABs. He agreed to order NAB test; NABs were elevated but not off the charts. I expressed concern that Rebif effectiveness may be reduced, so he then ordered another MRI to look for new activity. Thankfully, no new activity and my symptoms went away. At the time of my next scheduled blood test, however, I suggested I be retested for NAB and he said "sure." I do know that he is reluctant to order expensive tests unless he thinks that the results would alter our decision process on the course of treatment. From a cost-to-society standpoint, that seems reasonable to me.

So far we haven't disagreed on treatment. If/when that day comes, we'll see how flexible he is!

carolsue

p.s. I should add that I didn't like him at all on the first visit. He seemed unwilling to talk with me about the disease and treatment on a higher level and appeared to be annoyed by my scientifically oriented questions. That's changed and now I'm glad I stuck with him after that first negative impression.

Hi Brock,

My experience with neurologists (4 so far) has been similar. I had one get up off his chair and walk out of the room in the middle of a discussion because I wouldn't agree to any of the CRABs. I had another make a sarcastic comment in response to a question after a discussion on CRABs. I told him that I had researched the effectiveness of the those drugs on the net. Later in response to another question, he actually replied, "Well, you can look that up on-line." I now see his partner and I no longer even bother discussing things with him. I think it is an ego issue. They simply don't like it when I bring issues to their attention. I think I am supposed to just accept/respect their professional opinion and do as they say. Requests for any test have been denied. Maybe if I used another approach, you know, bringing it up in a manner that allows them to suggest the test, rather than asking etc..., but then I don't see why I should have to figure out which communication style might appeal to their ego in order to get complete medical care.

If anyone knows of a doctor located in S.E. WI willing to treat an M.S. patient without the use of a CRAB, by all means please send me the name via PM. I am especially interested in the abx therapy.

Cindy

Hi Cindy

I'm not sure how I happened to see this but it caught my eye. Have you been to www.CPn Help.org? Please go there! I am "katman" - Rica. (Katman was the barn-name of one of our goat bucks who was very tiny at birth- he was wonderful. I know this is OT.) Sorry. It is not OT to say that I have been very faithful to abx and supplements for almost 17 months- not easy!- , was disowned by now 2 neuros. and have gone from "at least 6.7" to 2.5 EDSS. I walk/RUN a mile a day (except during Flagyl) - then only 5/8 to 3/4 mile. I could not walk 5 feet without a cane or wall Sept, 2004. I later went to a walker- I cannot stress enough that you GET WORSE BEFORE YOU GET BETTER! doing this but unless you have a better way to spend the next year and a half I REALLY, REALLY recommend it!

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2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.

Hello,

I had a bad experience with my first neurologist. I figured that if I have MS and am going to have to see a neurologist regularly I might as well find someone that I am comfortable with that treats me like a person and not some sort of MS statistic. So I changed neurologists and found one that has a good bedside manner and is open to discussing treatment options with me. I think that your neurologist telling you to stop reading up on MS is a horrible, narrow minded thing for him to do. You have the right to have a say about how your MS is treated.

Alicia

Brock,

Unfortunately your neuro is another sad case of the doc treating the disease and not the patient!! Happens far too often.

Marg is fortunate to have a neuro who prescribes her the Prokarin which she has used very successfully for 5 1/2 years now. He doesn't necessarily believe in it 100% but has seen how well she has done on it. He places her health and well-being above some of his convictions. Other neuros could learn from him.

Harry

Harry,

I would almost be satisfied if I thought my Neuro was treating the disease, but he isn't even doing that. The bottom line is that the treatment I am taking probably isn't sufficient. He doesn't care what the efficacy is. He just knows that I had an MRI that had A LOT of spots on my brain, none on my spine, and he has been taught that if that happens that it is MS, and that he should prescribe a CRAB to the patient. I can teach a monkey half of that. He doesn't know any more about MS than you or I, or at least that is my observation. Grrr!

Brock,

That's even a worse situation!!! And when you challenge them, they feel insulted....give me a break!!

Take care.

Harry

Dear folks:
Hi, just skimmed through this...



I think you mean to say:
www.CPn Help.org
which has the "chlamidia pneumoniae network help" page, which talks about the antibiotic protocol etc. I tried using the link in the body of your message, which looked like the same link, but when I got there was some kind of political action thing about government and zoning regulations or something. Good thing I had saved a Favorites a couple of days ago!

I have done the same thing typing "www.nmss.com", which is some business site. Kind of annoying. You'd think someone would have the sense to keep the webpage addresses from sounding the same! Take care everyone!
Ronnie

Ronnie

Thank you! You are correct, or course! Glad you saw it.

Rica

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2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.

After experiences with 4 neurologists, I was ready to give up. One group kept wanting to prove that I didn't have seizures. Another refused to call back medical personnel in a hospital I entered because he did not serve there. Was about to give up until I turned to my general practitioner. She referred me to Dr. T. at Jefferson Hospital in Philadelphia, a teaching hospital. Sometimes it is up to me to ask the questions about new treatments like statens and Vit. D. He is unusually willing to discuss such matters with me and my gp. I consider myself very lucky to have found such a doctor.
Linda

Dr. Marilyn Robertson in San Francisco is excellent. She has her own private practice at 2100 Webster Street.

Dr. Emmanuelle Waubant in the MS Center at UCSF is also very good. A little edgy, but knowledgeable. Also, hard to get to see--expect a three-month wait for appointments.

Both gave me good reasons why they recommended Avonex.

I would disagree here. Maybe they used to be well paid, but now that
the insurance companies have instituted their negotiated fees and
discount everything down to almost embarrassingly low amounts,
I doubt most are. Mine sure don't drive cars or have offices that would
reflect being paid VERY VERY well. An estimate would be $100K to $150K,
which is pretty little considering the extensive training they have to
undergo.

But we have our choice of doctors under most insurance plans.
Vote with your wallet if you don't like your doctor, and pick another
if one is available.

Trust me, I will. When it comes down to it though, right now, how much good can any Neuro do a patient with MS?