Ask to speak to the radiologist beforehand - as soon as you get in the department - tell them it is a must that you have a word with him before the MRI - that you've something to tell him in confidence. Tell them about the reschedule and that your family cannot wait over the long weekend for your son's results - mention what he's going through. Tell him where you will be waiting and where to come talk to you after the MRI. Call the ordering physician in the a.m. and ask him or his nurse to call the radiologist for a wet reading for the family, as they still sometimes call it, so at least you know what they find, as none of you can take waiting all weekend. Sometimes a hospital or imaging center's Patient Advocate who can help you get results if they are engaged.

Praying for your son, you and your family.

Thank you for the awesome advice. I would not have known to do that. How do you get a patient advocate? I think my son could use one since we know so little about the process. Also, how do we go about asking insurance for another opinion. I love this doctor and think he knows what he is doing but I would get a second opinion on my puppy, so there's no way I wouldn't want one for my son. Do you know where we can find patients rights when it comes to insurance requests? I'm trying to learn this on the fly, so any advice is appreciated. Thank you again for your prayers. I have contacted several prayer groups that will be praying for him tonight and again as a group on Sunday. I believe in the power of prayer since I have experienced miracles doctors said would never happen.

Pick out the doctor you want, call his office to be certain they take your insurance, have his specialty, phone number, address at hand and just call the Pre-Certification/Pre-Authorization number on the back of the ins. card and tell them what you want - they will approve it & give you a precert#and a letter in the mail. If he doesn't take your insurance, ask the precert nurse to approve him for out-of-network consultation as your network doesn't have another specialist you trust in it. You may have to pay up front and file for your own reimbursement if his office won't file on your insurance but most do nowadays.

Just call the hospital main number and ask for the Patient Advocate's name and phone number. If they don't have a Patient Advocate, ask for a Social Worker or whomever they employ to help patients deal with all the issues of serious disease testing, diagnosis and treatment. The hospital chaplain should be able to steer you to further patient help also. Get his number from the hospital switchboard. He's a great resource for any patient as he deals with issues like your son is having daily and is well aware what's available.

Thank You! I feel a little better knowing we have some options. I will look into those things while I'm waiting for my son to have his testing, including using your other suggestions. I'm very Grateful🌹🌹🌹🌹💐💐🌷🌷

I pray things go smoothly for your son tomorrow and he gets the best news possible. We know something is causing his vision problems - now to get about helping him! We are with you all.

Just letting you know that you all are in my thoughts and prayers.

Been thinking of and praying for your son last night any time I woke and this morning. Many special prayers are being sent Heavenward today for him. May God send you strength and courage today.

Praying and sending positive thoughts all goes well today. Jeanie is a true blessing in disguise...she is a wonderful Lady. She has been there for me too and so many others. Always giving of her endless knowledge.

I will be thinking and praying. Let us know how things are going when you are able. :love:

Right now we are still waiting for the MRI! I'm sooo frustrated! There is a back log of patients since it wasn't working...we probably won't get results until Monday:(

Oh, that is just horrible!!! Maybe take him to another reputable, respected hospital ER - a hospital you won't mind him being admitted to - and get him an emergency MRI tonight or this weekend. With his symptoms, especially if he has a little dizziness, too, one would no doubt be ordered stat.

This is almost surreal....my God, what devastating series of events bombarding you all at the same time....I usually have a pretty clear idea of a pathway to take....I have absolutely NO idea how you are even surviving all this.....such devstatuing news, first from the doctors, and then your son's solution to the issue if it is degenerative.

I am on my knees for you and your family and of course, your precious son.....
Lord, to make you wait for the entire weekend for results is cruel.......I am just soooooo sorry......I have nothing but prayers.......

I know you must be going through hell right now! We are all there with virtual hugs and our prayers!

If you feel strongly that your son may truly be a suicide risk you must ask the medical staff for suicide precautions for him. It may mean admitting him to a hospital to get him a therapist (and perhaps some medication to feel less anxious) and to keep him safe while they help him physically and mentally through this. He is grieving and scare -- both normal feelings in this situation. But, you do not want him to do something rash that he is unable to think through clearly right now.

Blessings and prayers for you and your family.

I am just seeing this now, and all I can do is send tons and tons of prayers for your son and your family. I hope he has a diagnosis soon, and a treatment plan with motivation to fight like crazy to get well, no matter what it is.

The MRI is done but it hasn't been read yet...the doc said he may come in today and will call us. In the interim, my son was given a prescription for Ativan which is supposed to help with anxiety. He was in better spirits yesterday. Thank you all for your prayers and concern. I have truly been blessed with all those offering thoughts and prayers. I will update when I know more.

Mri
 

Thank you for your post. At last, the MRI is done, you must be so relieved after the long and frustrating wait. Hoping the Ativan helps your dear son deal with his fears and calms him.
Surely the doc will read the scan today knowing how you are all feeling and stressed out? Praying that the results are better than you thought and that your son can be treated soon.
Thinking of you and praying for all to go well.
Hugs, Dot

I am happy there is some progress in the diagnostic area. I was thinking about this last night, and I think it was very inappropriate for a doctor to tell you of the "worst case" scenarios, before even doing any critical diagnostic testing. They should be working harder to find out what it is, instead of scaring the heck out of you with what it "might be". They should simply have said we need to find out what it is, and try to cure it; at least until they know what IT is. I am shocked that they presented possibilities, and percentages, at such an early stage.

The diagnostic process is so frustrating, and it takes time with most illnesses and leaves you scared and powerless. Once you know what it is that you are up against, you can focus on going for the cure, and take some of your power back. I know it is hard, but try to get the whole family focused on cure.

I'm sending lots of prayers, and yes there is actual medical evidence that prayers do work. Hugs to ya all too!

I am hoping the doctor is able to come in today and read the MRI. Good that they have given your son to give him some relief from being stressed and will keep him calmer.

I have you all in my prayers and thoughts. :love:

Praying and waiting to hear, can't imagine what your son and you all are going through today and tomorrow if the radiologist can't get in to read the MRI this weekend(more on that later). Hopefully the light sedation will help your son sleep some extra time and he no doubt needs it as stress is exhausting. I hope you have something similar to take as Mom's suffer through everything their child does. Just know you aren't alone and many are praying.

Still praying for strength for you all.

The doctor had the radiologist take a quick look, they will view it more in depth on Monday but right now they have not seen anything obvious, which is not good news. Depending on if they find anything on Monday, we will begin a new round of testing to determine the exact problem. First up, the doc says he will want a spinal tap. Right now it looks like that will be done on Wed. Unless they find something on the MRI that they didn't see yesterday. The Ativan does seem to be helping my son and we are trying to help distract him until we know more.

Thank you all again for your thoughts and prayers. When I'm having a difficult time, I come here to read your thoughtful posts.

Have they ruled out an ocular migraine? I've known two people that have had those.

One was prone to regular migraines, but this was different. About 5 years ago, she temporarily lost her sight and there was numbness in one of her arms. She thought she was having a stroke. The other had never had a migraine, but had two ocular migraines when she was pregnant (30 years ago). The first time, she was shopping at a department store and lost her sight and strangers stepped up to guide her to a place to sit down. They did not get a headache, and neither of them has had an ocular migraine since.

I would quietly inquire about this without him knowing. I wouldn't want to get his hopes up and them have them quashed if it turns out to be something else.

Prayers up!

Ocular Migraines Explained - AllAboutVision.com

Hm. It's hard to understand why seeing nothing glaringly huge growing in the brain isn't pretty good news for the time being but certainly we have to refer to the specialist. Is your son still having the vision loss pretty regularly? If so, I'm sure every event if frightening as can be but hopefully the medicine will get him through until a diagnosis is made and treatment started.

A good counselor, one who deals with people going through traumatic times, could sure help him learn some cognitive behavioral tools for how to deal with the panic and fear if the drugs stop working well enough - and can even help parents going though it all with a child.

The prayers and well wishes are still ongoing and we're here anytime you need a chat, to rant, rave, share or whatever. We're always here for you. And your son is tops on the prayer list.

They did rule out ocular migraines and his vision loss is ongoing...he has not had any improvement in his vision. The reason that the doc said its not good news that they don't see anything on the MRI is that means that the chance of it being a degenerative neurological disease is very high. The most common of these is MS but my son doesn't have any other symptoms for this disease. The doctor has not mentioned the names of other diseases that he suspects.

Currently, my son is unwilling to talk with a counselor. I have already been looking into one for myself as I find that I am having trouble with every day activities due to my concern for my son.

Still, that there is no indication of a fast-growing, invasive brain tumor has got to be better news where there is little so far. While MS can be dire, one of the low-blows of life that knocks any young man in the gut, it isn't always the worst of the worst medical news possible overall, far from always fatal, and treatment works well for so many, just as with some of the other adult-onset neurological diseases. Your son could just as well have one of the milder, treatable cases of whatever it is and still live a meaningful, quality life of love and achievement. And every day, wonders are worked with drugs, vaccines and treatment techniques. Sounds like platitudes no doubt but hope is a mighty force during scary times.

You, yourself, could benefit mightily from counseling and a good one can give you tools that will even help your son cope better as you can pass them on with a light touch. Even though you can't take them longterm, tranquilizers and sedatives were invented to help humans deal with new, sudden, frightening stresses as you all are going through right now and can prevent high blood pressure, rapid heart rate, panic attacks. Prayer, faith, counseling/cognitive behavioral techniques and the love and support of family, friends and the community get you through long-term. It's amazing the angels that come your way in hard times. We'll always be here praying.

Thank you for your positive words of encouragement. I know that MS has definitely become more treatable...I think the doctors biggest concern is how quickly his sight was effected. However, I'm still praying for good news.

I am keeping your son and your family in my prayers. You are not far from my thoughts throughout the day.

I am so, so sorry that I've come into your thread so late....there's been so much going on at home, so I apologise.

Just to let you know, I'm thinking of you from 'over here', too...hoping and praying that you get some answers soon xx

Up late and thinking of you all tonight.

Burning the midnight oil for you, walking and praying for your son, you and your family.....