I recently started seeing a new neurologist this year. Since then I’ve had a flare up of eye problems. I have been having severe double vision and eye pain. I contacted my neurologist a few months ago and they (the Pa) ordered a 3 day round of steroids which didn’t help at all. I called them back and they referred me to an ophthalmologist who then referred me to another ophthalmologist who specializes in eye realignment procedures. After a very thorough evaluation she said eye realignment might not be a good solution because my vision is fluctuating a lot. She did get me a temporary stick on lens that helps with the double vision somewhat and I have a follow up in 2 months. I’m now also having trouble with my eyelid feeling swollen a being hard to open. The ophthalmologist asked me when the last mri was done and I told her over a year and a half ago.
now I’m having a lot of neuropathy in my feet and hands. I am wondering if maybe I should have another MRI but I’m hesitant to call my neurologist because I feel like if they tell me no and that nothing can be done I would end up just more depressed and hopeless. I don’t want to bother them if there is nothing that can be done but in the meantime really feeling down because my symptoms are really limiting my ability to be active at all. My question is. When is it time to call your neurologist back?
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Littledeer
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Now! Hi Littledeer ... lm sorry your feeling this way. And never feel bad about getting ahold of your Neuro! If they make you feel that way, get a new one!
We cant dxn you. But if you feel all of this is MS related, you call! 🤗💕🌠
Trying to get up the nerve to call. Think I will try to get my opthamologist report first She thinks the inflammation in the nerves behind my eye but said it looks like I might have mild optic neuritis in both eyes. The last time I called for an appointment with my neurologist at the Ms center t
Yes, you have new symptoms. My time is 24hrs after something starts up. I have brain and spine scans every year from my neuro, and when I have new or worsening old symptoms. My optho has and would order scans if my issue is eye related. I ended up getting an orbit scan after my brain/spine were unchanged last year, because I was still have eye issues and the nerve can't entirely be seen with just the brain scan. GL!
The opthamologist said she is going to try to find a neuro opthamologist but I guess they are hard to find. The reason I changed neurologist after 11years with the same neuro is because he had only done one mri in 6 years. I think he got in trouble by his practice manager. Even with my new neuro it takes about a month to get an appointment but I guess that’s better than 5 months with my old neuro. I’m just not getting better this time and I’m tired of just sitting here feeling like crap. Thanks for the support. Sounds like it’s time to take my head out of the sand.
Call your neurologist as soon as possible, Littledeer . You can also go to mymsaa.org and ask the doctor by sending an email to askdr@mymsaa.org . I am not sure how quickly they will respond but it is worth checking. 🤗
Like others have said, call the neuro NOW! Even if it means asking someone to speak to them with you present, to get you in for an MRI.
Failing that, go to A&E at a hospital that has an MRI. The doctors there will tell your neuro off for not getting you an MRI sooner! I hope it goes well for you, but in the meantime here's a hug from me 🫂❤️
Remember that doctors work for you. You pay them to help keep yoh healthy. It isn't bothering them when you call. I have several friends that are doctors & nurses & they want to see you to keep you healthy. So do t hesitate to call.🤗
I am a nurse and we prefer our patients to call us sooner than later. I would point out it has been a while since your last MRI and ask for both a brain and an orbit MRI so they can be done at the same time. Sometimes my neuro forgets to order spine MRIs with my brain MRI and I just send a message in the portal reminding them I have spinal cord lesions that need to be monitored and they add those MRIs to the order.Your neuro may want to consider changing your DMT depending on what you are on and for how long.
Call your neurologist. Also, check available contact methods. My MS Neuro has an online system that I log into, post my comment or question. I’ll get a response within 24 hours. It’s a great system as they have an assistant do all the records research for my doctor prior to her reviewing and responding. Last I heard she has over 700 patients. This system is accurate and appropriate vs a cold call question.
Mine does that, too, and it's great. When I wasn't sure whether I was having an exacerbation, I got that call in 20 minutes. They'd already lined up an MRI for me and had penciled me in for Solumedrol. It was all very smooth.
Hello, I agree with everyone, call you Neurologist. Sadly, steroids don't do much for optic neuritis. I don't know why the Neurologist didn't tell you that. It can take some time for your vision to get better also. But, with active MS you should have an MRI every year. And, yes you should try to find a Neuro-Ophthalmologist. They can better understand your optic neuritis.
thanks for all of your support! I’m going to contact my neurologist on Monday! I’m glad I decided to post here. Depression was getting me down and little support goes a long way! I will keep you posted .
Getting a new MRI might show new lesions an may explain the new problems, but it won't fix anything. This masy give you some relief, having a possible explanation for your new problems
littledeer.. I think everyone has been giving you good advice. Depression can make it very difficult to reach out when you need to.. you hang in there! You can do this!
I believe in being the squeaky wheel. "The squeaky wheel gets the grease!" So be the squeaky wheel. The way they will quiet you is to take care of you. It doesn't matter if you have to call every day.
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