My sister’s son, a freshman in college, has had double vision for 2 weeks. After trips to his doctor, a neurologist and an MRI, they’ve determined it’s MS. A second MRI is scheduled tomorrow at 1 and then they’ll meet with the neurologist again. We’re both single mothers with a son, so we share a lot and she’s asked me to go with her for the next appointment with the neurologist.
The more information we get from the internet, the more frightening it seems. Any suggestions or support would be welcome. Thanks.
I’m very sorry you and your family are going through this. Hugs all around. I’m going through something similar right now having been diagnosed with what will be a chronic lifelong illness that may be very mild or possibly deadly. I’ll share my thoughts from that perspective.
The most important thing my doctor told me after getting diagnosed was DO NOT GOOGLE. I know it’s our natural instinct (and I am certainly guilty of it) but the google always presents the worst case scenario. MS is a tricky illness that can be very mild all the way up through debilitating… but that means nothing to the individual person.
Allow time to grieve. It will probably take a while for the enormity of a diagnosis like this to hit but when it does it can be overwhelming. I’d recommend floating the idea of talking to a therapist.
Find a local support group (or online if needed). Even if nephew doesn’t want to go, you and your sister can to get an idea of what you might be in for.
Since he is 18, and I’m assuming a student (still in high school?), I’d ask what accommodations he might need and what lifestyle changes (if any) will likely need to be made. You might also inquire about an occupational therapist either now or in the future.
It can be really helpful to make a list of any and all illnesses, symptoms (whether you think they’re related or not), family history of illness, etc before going to the doctor because we tend to forget things when we’re there.
@scoutsmom - A few years ago I had a numbing sensation in my face/head. An MRI was taken and they found some lesions in my brain. The doctor called me and told me how sorry she was that I prob had MS. A second MRI was ordered with a contrast dye to see if the lesions “lit up”. If they had, the next step would have been a lumbar puncture. Fortunately for me it was a premature call by my doctor. I hope the best for your nephew.
Also, keep in mind that many neurologists tend to be quite upfront when they speak of these topics and it can be unsettling until you get used to such candid talk. They speak in “facts” and that was hard for me to process in my stressed out mindset.
I know your sister appreciates you accompanying her. Stay strong
I’m on my phone, so forgive any mistakes. First of all, I’m sorry your nephew has to go through this. Being diagnosed with a chronic illness is a very harrowing experience. Okay, so my mom has MS and I can give you some pointers if you wish. The most important thing right now is wait until after the second MRI. It took multiple MRIs and other tests for my mom to be formally diagnosed. The disease can be debilitating certainly but not in all cases, so keep your hopes up. I’ll PM you with everything I know about MS (which is quite a lot, I assure you) and my family’s experience with it as soon as I get to a computer. Stay strong!
I was diagnosed with MS about 13 years ago and I’m doing well. It was very scary at first because it’s hard not to read about all the possible outcomes and terrible symptoms you can have. No one has them all!
I’ve never had problems with my vision and since that is the trouble your nephew has its important to verify whether he has MS or a form of optic neuritis. Once that is done he can proceed with some kind of treatment.
It’s hard to be patient but MS is a kind of neurological injury and those heal slowly. If you cut your skin it heals in a few days. If it’s a deeper cut, it takes a bit longer. If you break a bone it takes even longer. A neurological injury takes longer than that and that is just how our bodies normally heal so don’t let that prospect be frightening.
Most people with MS lead very normal lives. My suggestions would be to have him keep a journal of any symptoms: fatigue, pain, vision, numbness etc. Find a neurologist who is aggressive in testing and treatments, start disease modifying meds ASAP pills are now available!!. I’ve had MS for approx. 19 years and my worst symptoms have been fatigue & pain/numbness in legs. I’ve learned to pace my activities & do the majority of work in the earlier part of day when I feel most energized. Everyone is different. I still work 40 hrs as nurse & work at a barn on w/e’s.
One thing I’ve noticed is that stress makes my symptoms worse. Even happy stress, like everything you need to do to plan a party, can have an effect. Don’t let this scare you though - it is just a reminder to take care of yourself. Avoid stress if you can, deal with it calmly when you have to, and know that things will get better afterwards.
Perhaps your nephew could take up mediation or some other practice that is relaxing and beneficial. I mention meditation because he can do it with his eyes closed so he wouldn’t have the reminder of his vision problems. He could also just relax by listening to music with his eyes closed. He is young and will have vast reserves to help him cope with this!
I am very sorry about this diagnosis. I know a few people who have been diagnosed with MS and the one thing I have learned is that there is no “typical” trajectory for the disease. It can progress slowly or quickly, the symptoms can be mild or severe. A relative has benefited from new medications that have reversed some symptoms, allowing her to lead a fuller life. She needs some assistance but it’s been over 20 years since her diagnosis and she leads a rich life with many friends and good social support.
Get a 3-ring binder, and divide it up into insurance paperwork, test results, and those papers they give you after a doctor visit. Dividers with pockets have been most useful for "shove it in now, sort it later" times. It may be useful to call the insurance carrier and alert them to the diagnosis -- many carriers now assign a caseworker to a patient in these circumstances.
When getting tests or meds, ask "What does this address? What results might we expect? What will results tell us?" and "what are side effects? when should I call if I'm having them?"
Don't borrow trouble. You only know what you know when you know it.
Don't invest too much in a single visit, procedure, drug or doctor. Chronic debilitating illness is a journey, not a destination. Also, doctors work for YOU. Discard all that being polite, and not being a problem. Ask, ask, ask.
Try to always have someone with the patient at doctor visits. Another set of ears is really good when you are kinda numb with fear and shock.
See #1. Have the patient sign a HIPA release and insist on copies of all test results. You won't believe how many times that is handy to have.
And lastly, let your sister talk, or not talk. Listen, listen, listen. The isolation of chronic illness is real – so don’t be shy about saying “Do you want to talk? Or do you want to think about something else?” There will be ups and downs and ditches and hills but there will also be beauty, kindness, joy, and victories.
Wow, @greenbutton, what an excellent post! I am going to print it out for my friends whose kids are diagnosed with mental illnesses. All of your advice applies to them, too!
Thank you all so much for your insight and empathy. Your validation of what we are going through is more reassuring than I can say. We do need to back off from the “what’s the problem/how do we cure it” view we had until now, but it’s hard. As many of you know, nobody can even tell us what to expect.
Unfortunately, the insurance company is already involved and since they have a 48 hour turn around for the contrast MRI approval, that didn’t happen today. But he did have a blood test ordered and we found out that the neurologist is checking for NMO, which is an autoimmune disease and not MS. (My sister’s not sure if he told her that and she missed it, or if he added the bloodtest later.) NMO specifically attacks the optic nerves and spinal cord, and, like MS, has attacks and remissions, but the attacks do have accumulating effects on the spinal cord - so more to worry about. (I wish we could stay off Google, romani, but that’s not happening.)
We are going to do the binder, @greenbutton, so thanks for that advice. My sister is not shy and has no problem asking questions, so we appreciate your suggestions. He has signed some HIPAs, but it seems everyplace has its own forms. We will take your advice on copies of test results, too.
My nephew is feeling okay, except for his vison, and it seems he’s not letting himself believe anything until the test results confirm it (is that a guy thing?). But this is not how he planned to spend his first spring break.
Thanks again, and I’ll update when we get results.
My mom was diagnosed with MS 30 years ago. 15 years ago they realized they made a mistake. She has had a lot of neurological problems off and on over the years.
My parents have been to every high end hospital and neuro guy in the country. If anything, the lesson we have learned is that neurology is just this side of witchcraft. They are guessing sooooo much of the time. the brain is so complicated. The profession seems to really attract the no-bedside-manner crowd too. Hopefully you’ll find a good one.
Best of luck. And to follow @greenbutton, ask ask ask, and be a pain.
^ To add on to that, if it does turn out to be autoimmune, you might not get any more clarity than if it is MS.
Unfortunately, these types of illnesses are just not well understood and it’s often a guess and test with regards to treatment and disease progression. That is just something to be prepared for because it’s so different from how we usually conceptualize illness in the West.
When someone has a debilitating illness like MS , one of the most important things to remember that it is very important to pace oneself and not over do it. Overdoing can quickly send someone into an exacerbation. I also suggest an occupational therapy assessment like @romanigypsyeyes suggested. You should suggest that he contact the school’s disabilities office to establish accommodations early on.
As others have said, MS symptoms range from mild to severe. I was diagnosed with MS 13 years ago and it’s pretty much a non-issue for me, as I’m on the mild side. I hope your nephew is too.
Just to add - in case the Dr. orders a spinal tap, they don’t hurt anymore!
I also changed doctors after the first 3-4 months and found a better fit. Sometimes you can find a neurologist that is an MS specialist. There wasn’t one where I used to live but now, in a smaller city, there is one. For CAM therapies, check out the Jimmy Huega center or the Rocky Mountain MS center, both in Colorado (they have web sites). Rocky Mountain MS center wants a one time donation (about $35) but then you can search their archives and receive their newsletter forever.
Update on my nephew: We met with the neurologist after the contrast MRI and the blood tests. According to those results, my nephew has neither MS nor NMO. What they thought were lesions on his first MRI they’re now telling us are signs of an infection on the lining of his brain. But the neurologist could not tell us what kind of infection or what to do next, except to send us to an infectious disease specialist.
We were completely unprepared for that discussion. My sister is working with her insurance company to get an appointment, but we have so many questions now that we’ve thought about it. We’re hoping the doctor would have told us if he was infectious, because he’s going back to school tomorrow; we’re also hoping it’s not environmental - since he’s going back to school tomorrow.
Isn’t an infection of the brain lining meningitis? But we’re both sure the neurologist never said that. And why wouldn’t he start some kind of antibiotics? My sister going to try to call tomorrow with some questions, but honestly, the feeling we got from the neurologist was “sorry, not my thing, good luck.”
And he still has the double vision, but the opthamologist told us that prism glasses were not a realistic option - they would need to be changed every two or three weeks as my nephew’s condition improves; at least the good news is that the doctor thinks it will improve. So he’ll be wearing an eye patch until it does.
So we’re relieved and we’re confused, and of course still worried. Thanks for listening.
First of all I am very sorry your family is in this horrible diagnostics nightmare. I wouldn’t be getting any sleep.
Since infectious diseases are “not his thing” maybe he is wrong on this too.
If he thought it was an emergency I think he would have sent you to someone immediately or an ER.
I have no ideas except that if you make enough noise someone will see him. So I would be making lots of noise.
Maybe your son should not go back to school. Not because the brain lesions might be caused by an infection, but because of the double vision. I think it would be hard for him to go to classes, study or do anything with that condition. I would check with the registrar and see if its not too late to withdraw for medical reasons so his grades and gpa do not suffer.