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MS Doesn’t Make Us Immune

Posted May 17 2010 7:11am

As if having MS weren’t enough, we all need to be aware that it doesn’t protect us from other serious conditions as well.  So if you’re having unexplained symptoms, it’s always best to have them checked out. 

Help Your Doctor Help You.

I know, I know. If we ran to the doctor every time we had a twinge, we’d be setting up camp.  Whether it’s appropriate to consult a doctor is a judgment call that is not always simple.  We all know how very weird and unexpected some MS sensations and symptoms can be.  

I personally get the hiccups.  A lot.  These are not ordinary hiccups—they’re more like a mini-seizure accompanied by the sound a very aggressive duck might make.  I worried, and still sometimes do, that they are a sign of some terrible stomach condition. But my understanding is that the brain stem is the command center for hiccups.  Since my biggest lesion is on my brain stem, I figure it’s just acting up and have learned to laugh and apologize to the people around me.  At the same time, I know that hiccups are not always just hiccups.  

And that is because, unfortunately, having MS doesn’t immunize us against other serious conditions.  This can complicate things for doctors trying to decipher what’s really going on in our bodies.  MS is largely a mystery even to neurologists, so it’s no surprise that another specialist, one who knows little or nothing about MS, may head down the wrong path with the best intentions. He may be too quick to attribute a problem to MS, and miss something that needs immediate attention.  You know your body, and your MS, better than anyone.  If you feel that your chronic backache isn’t MS-related nerve pain, insist on appropriate tests.  If your doctor doesn’t listen, find one who does.  

On the other hand, many common symptoms of MS, such as fatigue, are also symptoms of literally hundreds of other conditions.  So a doctor may err on the side of performing unnecessary tests.  Again, it’s a judgment call, with too many variables to distill down to a few easy guidelines.  This is one reason it’s a good idea to have a GP who knows you well.   You and your doctor are a team, and like all teams, the longer you work together, the better you work together.  

I encourage you to make clear to your GP that you expect her to be the coordinator of your entire medical treatment.  This means not only knowing every medication you’re on, but being willing to communicate and work with your MS and other specialists.  

I learned the importance of this the hard way when I began experiencing severe shortness of breath, a racing heart, and a feeling of “shutting down,” all symptoms that had preceded my onset attack.  I knew I was having an exacerbation.  Having been told countless times that it is imperative to start IV steroids as soon as possible when a relapse strikes, naturally I went to my MS doctor.  Since steroids can be dangerous if one has a heart or lung condition, he insisted that both be ruled out.  So I went back to my GP, who said he couldn’t order the necessary tests, and inexplicably refused to ask his cardiologist and pulmonologist colleagues to give me priority in their schedules.  So, rather than wait the three weeks that would have been required to get in to see the specialists, I went to the ER.  Twenty-four hours later they’d done every heart test in the book, but said I’d still have to see a pulmonologist about the shortness of breath.  Again, the quickest appointment I could get was three weeks away.   

So that afternoon I presented myself at my MS doctor’s office without an appointment, and expressed my humble opinion that in three weeks’ time I’d be coming out of the relapse on my own.  With steely determination I told him I wouldn’t leave until I was started on IV steroids.  Whether I scared him or he just decided it was worth taking the risk, I don’t know, but I was hooked up every day for the next five days, and that took care of the relapse.

To sum up:  Find a GP you can trust who will truly partner with you.  Beyond that, each instance is a separate judgment call.  Pay attention, and make sure your doctor pays attention.  Speak up for yourself if you think she’s ignoring something, or if you think she’s going overboard.  Strange as it may sound, diagnosis is as much an art as a science.  Help your doctor help you.

Have you had a condition misdiagnosed as part of your MS?  What advice would you give your fellow MS patients? 

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