I think my Neurologist lied to me.

[eveningmood]

Hi everyone,

I need some help. I was told in August 2010 that I have MS, but was not officially diagnosed until August 2012.

The Doctor who told I had MS was the most discouraging person I have ever talked to. The first thing he told me is that I would never walk again. Then went on for 10 minutes of why i would never walk again. I had just turned 26, needless to say it was not a good day.

Then he put me on Rebif which made me so sick that I only took it for about a month.

So about 2 months ago I had another flair up, I went and saw him again so I could get steroids. He told me no. He said that "steroids are like rubbing a magic lamp, only three times with they work." To me this sounds like the biggest load of bull I have ever heard.

I am pretty sure that is wrong, but has anyone ever heard something like that? Or was does your Doc say about steroids.

I just saw a different Doctor and he was shocked that I was never given a LP. I told him what my MRI of my spine looked like, he had his nurse get the doctors report and immediately ordered the test for NMO.

So from what I was tell, the first guy is lazy, ineffective and doesn't care when his patients are doing bad.

[Whimpurr]

!You need to find a neurologist who is an MS SPECIALIST! Even if it means travelling out of town

[MSer102]

Yes there are lots of bad neurologists out there. I'm sure that's why so many of us with MS have had to change neurologists sometimes many times. I think that if a neurologist doesn't see a fair amount of MS patients they don't have any reason to keep up with the latest information and so they go in information they learned in school that might be 20 or 30 years out of date like the part about never walking again. I read not too long ago that neurology is one of the specialties where doctors tend to burn out. So maybe that first neuro was an "out" guy - "out" of date and burned "out".

As far as the steroids go it does seem that the more you take them the less well they work but they don't become ineffective at three times! Steroids still work really well for me after taking them many times. But maybe that's what that neuro learned in school 30 year ago?

As far as an LP goes if your MRI's and your history and exam are pretty definite then it might not even be necessary to have an LP. A lot of people get diagnosed without them. So your new neuro might have asked about the LP until you told him about your MRI's but then thought with all that information you don't need one. And an LP can't tell the difference between MS and NMO so there's no reason to have one if that's what he's concerned about.

I had to quit a neurologist because she lied to me more than once. So it happens. Glad you found a new neuro.

[mjan]

Glad you posted this. What a jerk! Did you ever have problems with your legs for him to even mention not walking? Geezlouize.

It is good you are with another neuro. Let us know what he thinks and how you are doing, ok hon?

Hugs to you, hang in there!

Jan

[Jules A]

While I don't agree with everything he said and his bedside manner might not be great that doesn't necessarily make him lazy, ineffective and uncaring. That you had a bad experience with rebif isn't his fault.

A LP is often not necessary for diagnosis and imo an invasive and very unnecessary test if you have already met the criteria for MS.

I have not heard the three time for steroid thing but they absolutely are both a blessing and a curse. You have to weight the risk vs. benefit every time you consider using steroids.

[BigA]

That sounds shameful and you should contemplate a professional complaint.

I do have some questions, although these are not good reasons to talk to you that way, he may have tried to scare you. Did you indicate a reluctance to inject? Some doctors can't handle a patient who will not take a DMD.

You say the Rebif made you sick. Did no one tell you that it 's a well known side effect? Interferon can be horrible, but you get used to it eventually. Also, were you not told about copaxone, which has fewer side effects or gilenya, which is a pill? I've never heard about the three time rule for steroids.

I would say your old doctor was terrible and good for you for changing doctors. But where are you in all of this? You're young - are you researching your options? Are you going to any seminars? Are you speaking with others? What about your family doctor? My advice is to become an active patient and read about your condition and get educated. Scour this website for posts by someone named "Redwings" and NMO. She had it and gave expert advice. The treatments for NMO are different than MS, so you'll want to get it right. And don't hesitate to get a 2nd opinion.

Keep us informed. Good luck!

[BigA]

Here's the post by Redwings. Read people's questions and her replies. She was misdiagnosed with MS when it was MNO. The treatments are very different.

http://www.msworld.org/forums/showth...th-diagnosis-(

[aitch10]

Hi! I'm so sorry your doc was so rough on you. I think the tough love approach is fairly common, though.

I was diagnosed 10 years ago - at 29 - and my neuro(whom I adored) asked if my then boyfriend(now husband) knew what was possibly in store I was like, "sure! My mom has had MS for years so he knows all about it." To which my neuro said, "everyone's MS is different and many partners can't handle it if it goes badly. Just be prepared if he bolts."

Ouch!

Sorry to digress. I agree with PP's that a MS specialist is good to see if you can. Also I've never heard about the steroids only working 3 times. Many docs are reluctant to offer them too many times because of potential side effects, but the not working thing is new to me.

In any event, good luck with finding a new neuro and getting aproper DX and treatment.

[JerryD]

You did the right thing! Bag the loser neurologist, IMO. If you want to deal with a neurologist who you know deals with MS all of the time, call your local chapter of MSAA and get them to give you a reference to a MS neurologist in your area. I saw 4 neurologists before I settled on my current doctor. It is really a long journey. Good luck

[Kimba22]

I have had 10 different neurologists. 2 that I really liked moved out of state, 7 others just weren't that well versed in MS or I didn't like them. I've definitely seen my share of neuros with horrible bedside manner. I see a MS Specialist now. I don't always agree with everything he says, but he's earned my respect. I know he has my best interest in mind.

I wonder if that neuro sent you for a MRI the last time you saw him. It is pretty standard to start steroids if the MRI shows active lesions. It doesn't do much to alter relapses or disease progression, but can help to halt symptoms and get you back to functioning sooner. Your body will eventually get over the flare w/o steroids. But the comment of only 3 times they work is a line of baloney. They aren't a miracle to restore your function, depending on your disease progression, though.

Steroids do have their risks. They put you at a greater risk for diabetes, osteoporosis, infections, and cataracts. I even got steroid induced psychosis once. I do know some neuros are more liberal at prescribing them.

There are other drug options than just the interferons. Ask about starting one of them if you can't tolerate the side effects. They do give the majority of us flu-like symptoms, some a lot worse than others. It took me close to a year to adjust to them. You do have to be compliant, though, to see if a DMD will help you.

I hope you have a lot better experience with your new neuro.

p.s. Anybody know why Redwings hasn't posted for so long?

Best Wishes,

[Katje]

I had neuro's like that years ago. Told me the same, I would never walk again, I would be blind in my left eye etc...

almost 30 years later, I can walk, see 20/20 in both eyes and no changes in my MRI in all that time.

Move on and find another neuro and don't let them get to you. I am really hating how we get treated by doctors in general. Reading this story makes me even angrier.