The reason why the neurologist probably did not start your nephew on antibiotics is because he doesn’t know I what he is treating , and the infection may be viral and not bacterial . Viral infections do not respond to antibiotics. Stay on the insurance company for that preapproval for the infectious disease consult . I agree with @kjcphmom to see if he can withdraw for medical reasons so his GPA won’t suffer and so he can be closely watched by his mom .
How soon can ID doc be seen. I’d hound the neuron to get the soonest possible consult. They tend to be able to get it sooner than those of us with no connection to IDs.
I’d also start looking into a medical withdrawal bit will take time to sort things out and help the patient recover from his symptoms. Get a note from the neurologist and others that his current medical condition is interfering with his current ability to study b
Call the nephew’s regular doctor and have him seen immediately – just as if he were throwing up over the weekend— to discuss the concerns. When is the specialist appointment? If it’s not within the next two weeks, make more noise. Emphasize the vision and the ambiguous MRI. Calling the neurologist will probably net you little as the doctor won’t take calls – you’ll end up leaving messages that a nurse will return – but go ahead and ask about school. The magic doctor words are “not acceptable” as in “I’m sorry, but it’s not acceptable to wait that long, he’s really sick. What else can you offer me? Can we come at lunch? is there a cancellation list?”
I would not let him go back to school. You can’t guess what else he could catch, let alone spread. Call the admin, say “brain” and " viral infection" and then have them tell you about homebound instruction. Email the teachers and have someone (a friend, an adult) ferry assignments back and forth until there’s a treatment plan. Your sister’s employer should get a heads-up as well. This is when our reluctance to make a fuss, cause an inconvenience, or seem alarmed only to have it be nothing gets in the way. Fuss. Be calm and nice but be inconvenient.
Make a phone log and start keeping track of who you call, and when. Good luck, and let us know
We have an appointment with an infectious disease specialist on Wednesday, but we’re concerned that it will just be the beginning of a long, thorny path of its own.
My nephew’s double vision is caused by the nerves in his left eye keeping it from moving properly, and on Thursday he noticed symptoms of the same in his good eye. Frantic call to his PCP got things moved up, but he (a doctor who knows my nephew well) told my sister he still thinks it’s MS, although he said it was beyond his area of expertise to say so. That comment has caused us a lot of concern - isn’t a contrast MRI as good a diagnostic tool for MS as there is? Should we ask to have it re-evaluated?
And, believe me, we had lots of conversations about going back to school, but my nephew was adament about “not stopping his life” for this. His school is less than 2 hours from my sister by car, and he’s within 20 minutes of one of our brothers, so for now, my sister agreed. We do know that he has until the second week in April to apply for a medical withdrawal.
Again, thanks for your concern and suggestions.
Thanks for the update! That actually sounds pretty typical – doctors only agree on TV, and you will see a few before a consensus develops. Hang in there.See what the infectious doctor thinks but yes, I would find a doctor with MS experience and have a copy of the MRI sent to him, or have him/her order a second one if everyone is still undecided.
I didnt realize he was in college, somehow !
Just an anecdotal story, a family friend’s daughter mysteriously lost vision in one eye and MS was the best -case possible diagnosis they offered. A few weeks later, the swelling cleared and her vision was restored. They declared that it has been a mysterious viral infection. Bizarre, so hang in there. It was a nightmare for her parents with all the conflicting medical opinions!
Medical opinions can vary and be conflicting and very confusing. A relative was told she had lupus and was treated and had BAD reaction to the Rx. Fortunately, it has since been in remission for decades, so her primary physician is now thinking she NEVER had it, even tho she has been monitored by him and rheumatologist for decades since.
I agree, it’s important to continue with the docs and hang in there to figure out what’s going on. The more you have loved ones with conditions medical science doesn’t understand or treat well, the more you realize how much medicine is an “ART” rather than the science we grew up thinking it was.
No answers yet for my nephew, but more tests. We saw an infectious disease specialist on Wednesday, and we all really liked her - she had a very calming demeanor. She said our bodies’ immune systems were far ahead of our knowledge of medicine and she sees lots of symptoms resolve without being able to diagnose the cause. She didn’t promise us that, of course, but it made us feel better anyway. And my nephew’s vision is either improving or he’s compensating better, and he only really needs the eyepatch when he reads, so that’s made us hopeful too.
The doctor will be looking at all the test results so far and both she and another radiologist will look at the MRIs. She didn’t rule out MS, but she didn’t think it was likely.
My nephew had an MRA to check for bloodclots, a chest X-ray, and more bloodtests - they took 11 vials! She told us we could wait till after his exams to come back in, but she would obviously let us know sooner if she found out anything definite from his tests. So our next appointment is May 12, and we don’t know whether or not to hope we hear from the doctor sooner.
Thanks again for the supportive comments!
Thanks for the update, @scoutsmom.
Glad to know the eyesight is improving. He had to be frightened to death. Pulling for all of you for a quick, healthy resolution.
I appreciate that you keep coming back to let us know what’s new.
Glad you had a calming ID doc and that she is doing more testing. She sounds like a good sleuth and willing to search for the correct cause of your son’s health issues instead of just choosing a label and telling you to deal with it. May probably seems and feels a long way off but will be here before you know it. So glad his vision is improving. Hang in there! :-SS
Thanks for the update – and no news, is good news, as far as hearing from the doctor before May. Fingers crossed!
As for blood draws – he’s allowed to ask to lie down. Techs never tell you that, but if they are going to do a lot, sometimes it’s easier to just not sit up.
It’s also important to take your time getting up and hydrate, with OJ and water. Some places offer you those, my doc’s office didn’t, even tho I requested it after having 10 vials of blood drawn.
Any updates?
@scoutsmom Glad to hear that the diagnosis of MS was found to be unfounded. I was diagnosed with MS my freshman year after two years of tests and various fleeting symptoms. I had previously been diagnosed with everything from depression to chronic fatigue. There is a lot of research that now suggests that there has been an over reliance on MRIs which, as in your case, can be misleading. The good news is that there are now a number of disease modifying drugs. I’ve had excellent results with them and now suffer from only periodic, mild, exacerbations. And I finished college without 99% of people knowing anything was wrong.
Here’s the update: about 5 days ago, my nephew’s double vision resolved itself. It got gradually better, and now he has no problem. Yesterday was the appointment with the infectious disease specialist. She had no definitive answers, but her best guess was West Nile. His blood tests showed exposure, and she told us that nerve paralysis was a common symptom, so she thinks that is a likely culprit. She doesn’t want to see him for three years, unless of course there are more problems. She told us that she had consulted several colleagues, and the only thing they agreed on was that it was a unique case…
And, icing on the cake, he wound up with straight As for the semester - he says studying kept him from worrying, so he did a lot of it! So, aside from giving my sister lots of grey hairs, there’s no damage from these past frightening weeks.
Thanks to you all for your concern.
Wonderful news . Congrats to your nephew.
Oh, that’s such terrific news. Thank you for letting us know the outcome of this frightening experience.
Wonderful! Great news 
Yippee! That young man and his family deserve an awesome summer! Hope his great study habits stick! =D> 