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First follow up neuro appt, neurologist ignored my questions...
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randallwhitlock1990 posted:
Hi everyone, I have some questions regarding experiences with neurologists. I am a 22 year old male, just diagnosed earlier today with Clinical Isolated Syndrome earlier today. Some brief history:

I presented in mid March with binocular diplopia, which worsened for nearly a month before maintaining a certain level of visual disfunction. About a month later, I began having ptosis of the left eyelid. Just over a month after this occured, The right side of my face became completely paralyzed. I was not able to even close my right eye completely using effort.

Now, I had my first appointment with a neurologist today. At this point the only remaining symptom of my original symptoms, caused by three separate lesions, is the binocular diplopia. It improved slightly at one point, but there has been no difference in over a month other than the occasional worsening of right eye deviance.

I was unsure if the neurologist was even going to be willing to diagnose me with MS at this point, but after I explained the situation and he pulled up the notes from the emergency room visits he was quick to offer a diagnosis and got the paperwork started for the $0 copay of Rebif.

Here is where I have a problem: After he gave me the information about disease modifying drugs, I attempted to talk to him about some symptoms that have been appearing since I last left the hospital. He told me that I did not have new lesions, and that it sounded like it was just anxiety. I could not believe that he had the nerve to say this to me, when he had not even been willing to listen to the symptoms that I have been having. I attempted to mention a couple of the most troubling symptoms, like electric pains shooting through my right jaw and worsening dizziness and balance problems. Before I was able to mention any of the other symptoms that are causing me a lot of grief and not a little anxiety, he stated that he was not willing to treat any of the symptoms at this point, and that I needed to get started on the disease modifying drug before we started worrying about any of the other symptoms.

To me, having just come in to my first neurologist appointment since leaving the emergency room, I felt that I had just been told, "Well, it's confirmed, you have an incurable degenerative disease. Thank you for spending nearly three hundred dollars, we'll talk more when I'm done avoiding all of your questions. Also, I refuse to treat any of your symptoms unless you're on a disease modifying drug."

Needless to say, I'm hurt and upset. Has anybody else ever gone through something similar?
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dawn0204 responded:
First of all, sorry for your diagnosis and your neurologist's lack of concern. Unfortunately, there are many neuro's with the same "personality defect." However, starting any DMD without doing your own homework, isn't going to be very helpful. I was on Copaxone for 1 1/2 years and actually got worse. I've done better without the drugs. I am very prone to side-effects and I seem to get the really "unlikely" ones. Read up on the potent drugs your doctor is prescribing and make the best decision for you. If he won't agree to your informed decision, you can always find another doctor that will.

My neuro treats only my symptoms and we check my lesions yearly via MRI. I have been stable since I went off of the meds. I do get treated for the electrical shocks and tingling with Gabapentin. I take a boat load of it, but I do not have any adverse effects from it. I am also on Amantadine for fatigue, which helps but does cause dry mouth. I teach full-time and without the meds, I'd be a mess. I'm not saying don't take anything, I'm saying make the decision that is best for you. There are many out there and you know your body best, your doctor only thinks he does.

If you are able, exercise. It will help keep your body strong but it will help you mentally to feel as normal as possible. I ran until recently when I slipped and broke an ankle. The fracture was not MS related (nor running related, I'm just klutz), so I will eventually run again. It was my time to believe in myself and know that I could do something that many "healthy" bodies could not.

Also, watch your diet. There are many good healthy diets you could follow that are MS related. However, just an overall healthy diet will help you as well. Take vitamins and learn what works best for you.

Please feel free to ask questions. I will help whenever I can. Take care of yourself.


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