Whoever said you are on your own because of your MS label is wrong. There are studies being done with SP now, and right now I'm looking at an article in Neurology Now about how high doses of a statin have been found to help slow brain atrophy in people who are SP.

Who really knows what label to give you, anyway? My neuro says I'm RR; I consider myself SP because I've never flared since diagnosis 14 years ago and some of my symptoms, ever so slowly, are getting worse.

Ampyra made tremendous strides (pardon the pun!:p) in my walking ability, so please don't think there's nothing out there for you anymore.

I've had my problems with doctors who are dismissive. This is the way I see it, based on bits of information I've gathered from my own experience, from things doctors have said, and from browsing around in medical literature.

Some doctors are vigilant about people who are seeing them, not because they're so very ill, but because of what they call "seeking secondary gains."

MS is such a difficult disorder to diagnose, and its symptoms are often something that can be faked. Neuros have to be gatekeepers, or think they have to be--keeping the scarce benefits reserved for the truly needy.

Yes, there are people who calculatingly go to doctors and fake their histories and their symptoms--and sometimes get away with it.

Also, there are doctors who see it as to your advantage if you can keep on functioning and being gainfully employed for as long as you can even though it certainly looks as if you have MS. They may even be very sure you have MS but they won't commit to it on paper.

They're afraid of being found to be wrong.

They also don't want to get saddled with all of the paperwork and red tape that is involved if a person is diagnosed with MS and applies for benefits.

Social Security disability, other disability insurance, SSI, special transportation, financial aid like welfare, mobility assistive equipment--the list goes on and on, and each one of those services involves a jillion forms to fill out, often on a recurring basis.

It's grossly unfair to the patient, of course. What we need is more conscientious, caring doctors....

Part of the reasons I really liked my neurologist is (and he is leaving place I go - poop) is he is a very knowledgeable MS Specialist neurologist at a very reputable hospital and he never insisted on MRIs (which I believe only show progression IF in the see-able parts of brain - duh, like I don't already get symptoms?) and never (as I told him in my farewell e-mail) never acted like a petty god who had all the answers and there were answers out there. A once a year appointment was fine. In between he never ignored my e-mails and treated symptoms or referred me out for any problems. Good without copping an attitude. If you have to act like and tell people you're really good, you're not. It makes me sad to think he was an exception, not the rule in Neurologists. I expect to a degree the same in my next person. I need a doctor who knows he's a person and sees I'm one too. We don't have to be BFFs of course but must respect each other.

He never pretended he could cure MS and I respect him for that.

I'm PPMS, have already tried several things. Had he thought something would help, he would recommend it. Had I wanted something, I would have asked.

I hear ya!
 

I hear that. I copped the same thing. Why didn't I seek help at the time I was so sick. I couldn't barely walk. Talking was slurry. Brain was too foggy to drive and on my own with no friends or family. I got called a liar. I had a Dr yell at me and call me a liar. Thankfully I found a real Neuro that believes me and treats me like a human. Some Drs are in it for the money and some actually care.

I have a good one now and I hope yours is good too.

Every time disease or an idiot knocks us down we get up stronger. Keep fighting!