A touch of MS

[jreagan70]

I believe my neuro was thinking that an immunosuppressive drug like a steroid would shorten the flare up, or stop it.

Thanks for clearing that up. The trouble spot is terminology.

It's true that glucocorticoids/corticosteroids have immunosuppressant properties. And, of course, before other immunosuppressants were developed, people with inflammatory conditions were treated with steroids, often for the long term.

But steroids are a class of their own, and in medical terminology they're referred to by their class name of steroids and are not included in the group of drugs known as immunosuppressants. It's correct to call a steroid an immunosuppressant in a technical discussion, but it isn't correct in common usage to refer to a steroid as an immunosuppressant. In common medical usage, steroids are referred to as steroids and immunosuppressants are referred to as immunosuppressants, with the understanding that the two groups of drugs are different.

So to avoid ambiguity, it's best not to refer to a steroid as an immunosuppressant or immune suppression drug because your doctors are not going to be thinking steroid when they hear "immunosuppressant." They're going to be thinking of other classes of drugs, and will be just as confused as the people reading your post.

Because of their long-term side effects, steroids are used more often now as short-term anti-inflammatory medications. (To complicate things further, there are also nonsteroidal anti-inflammatory drugs, which are not immunosuppressive.) The other classes of immunosuppressants are used for long-term immunosuppression whenever possible. But even when a person ends up on long-term steroids instead of another class of immunosuppressant, the situation is still referred to as the person being on a steroid and not on an immunosuppressant to differentiate the two groups.

So it sounds like your neurologist was thinking that he would put you on a steroid for awhile to try to reduce inflammation that might be contributing to your pain. That little part makes sense because that's how steroids are commonly used.

But for long-term immuosuppression, the better medical choice is one of the drugs included in the group that's commonly called immunsuppressants -- again, like azathioprine, cyclosporine, methotrexate, mycophenolate, tacrolimus, sirolimus and cyclophosphamide. And, as has been pointed out, according to treatment protocols, an MS patient would go on an MS DMD and not on another immunosuppressant for long-term treatment. According to standard MS protocols, your neuro should not be putting you on long-term steroids instead of a standard MS DMD or any other immunosuppressant instead of an MS DMD. That's one of the reasons the MS DMDs were developed in the first place.

But again, your awesome neuro isn't doing what MS-savvy neuros do, and why what he wanted to do -- and would have done if he weren't moving away -- doesn't make sense.

In your situation, many, many neurologists would put you on a standard 3-day regimen of IV Solu-Medrol or high-dose oral prednisone, the way a flare is usually treated. (He probably should have done it months ago instead of making you suffer while he sent you off to have someone else figure out what the problem is.) If he did that, he could treat you right now and wouldn't have to watch you in the long term. A new MS specialist could then pick assume your care and prescribe a DMD if that's what you'd like to do.

The way MS-savvy neuros consider the situation, either you have MS or you don't. If you have MS and you're having symptoms (like pain) that originated with a flare, you deserve to be treated according to the standard protocol. Your neuro isn't following protocol and it doesn't make sense -- no matter what terminology you end up using.

I know you think your neuro is awesome, but it must be for some reason other than his knowledge and performance regarding MS.

As for starting a DMD, at first my neuro was hesitant because he wanted to make absolutely sure it was MS before starting one.

Put me in the group of people who think that if your neuro isn't competent to know on his own and be the one to make absolutely sure you have MS, he probably shouldn't be the one treating you. Especially so because he doesn't seem to be familiar with MS-treatment protocols.

That specialist said "you have a touch of MS. It's so mild I would rather watch you for now than start you on treatment because it's expensive and can be hard on your body." This "specialist" was recommended by the National MS Society website. As has been pointed out there is no such thing as "a touch of MS", so I'm not sure if I want to go back to him, but he scheduled a nerve conduction test for the end of this month.

The National MS Society says that they don't "recommend" doctors; they only provide names of doctors who are purported to be experienced with MS. The NMSS might be interested in hearing about your experience with the doctor on their list. Unclear terminology and failure to offer treatment early might get him removed from their list.

All in all this has been a strain on you. But it sounds like it might be better for you medically to start seeing a new neurologist. I hope it all goes well.