I know a silly Q. Since I was Dx with MS everything freaks me out. I have a pain behind my left eye and it hurts when I move it. I also have alittle pain on the left side of my forehead. I'm worried its ON, its been like this for about a week. I have just been waiting for it to go away. Should I call my Neuro or PCP? Or just wait another week and see? My eye sight is not effected.
I would let my neuro know. It might be ON, it might be a migraine, or something else entirely. That your vision is unimpaired is good but ON can present without affecting vision, particularly in more mild cases.
Whatever it is, I hope it resolves soon. Pain of any kind is no fun. Is it responsive to pain medication? If it is, I would think this would point away from ON.
Oh thats not good news, I tried taking some acetaminophen (3 to make sure) and it is still there. Maybe alittle less painful... Maybe I'll call the neuro just to be safe. I really hate MS, its so tough to know if its the MS or something else.
Don't be sorry. Everyone does it. Right before my last big flare peaked, I was having bad headaches everyday that seemed to come from right behind my eyeball. It's almost impossible to tell what is related and what's not.
I did alittle research and I think its my sinus. I have pain behind the eye, around the eye, in my temple, my back teeth, my cheek bone. This is all on my left side. My eye feels gloopy too.... I think its a sinus thing but I'll call my Doc just in case.
Called the Dr but was not there, they told me to call my pcp. My PCP was not really that helpful. Didn't look in my eye or anything.... said could be sinus or MS. So she wrote me a prescription for antibotics and steriods. She reffered me to the eye dr but can't see me till the 22nd. I'm not taking the steriods as I didn't see the point and taking both, i'll take them if I need too. My vision is still blurry with pain. Now my parents (in the UK) are worried and want me to go to the ER. Should I? Are they overreacting??? It's really stressed me out!!! What do you think I should do??? :(
That's a long time to wait to address something as potentially serious as vision changes. Not to mention being in pain without getting any relief from OTC meds.
I agree with what you said about your PCP not being that helpful. She should have examine you and it seems a bit careless and lazy to write you Rx'es for two very different problems. Steroids carry side effects and can lose efficacy with repeated use. Antibiotics are over prescribed, and if your problem is actually due to MS, or sinusitis caused by a virus, they won't help. And you risk developing resistance in future.
I don't mean to sound alarmist but I wish your PCP had been more thorough.
When I had ON it came on rather quickly over the ousre of several hours; first, foggy washed out vision in one eye, then sharp pain in that eye that worsened when I tried to move it. It got so sharp and so tense so quickly that I ended up at the ER at 4am the next day. I was 100% sure it was ON - and it was, after other causes were ruled out by the ER doc - and I was started on IVSM right away as well as given morphine and toradol which didnt help the pain much but knocked me out ad allowed me to sleep off the worst of the pain. I did a 5 day course of IVSM and recovered my vision quickly, within days of onset. The pain started easing off that first day and I think by day 2 or 3 it was gone.
I would seriously consider going to the ER so hopefully can get properly dx'ed and get started on whatever treatment is appropr
Symptoms of sinusitis associated with pain when moving the eye or swelling around the eye are an emergency and should be evaluated immediately.
Hi bubbles. It's so hard to say what another person should do.......
Here are a few facts I'd use to help with my decision.
• IVSM (not oral steroids) are believed to be useful in speeding recovery from ON
• steroids can’t stop or decrease ON damage - their only advantage is to potentially speed the clearing of symptoms
• bacterial sinus infections produce green or yellow drainage (when drainage is present)
• viral sinus infections (with clear drainage) don’t respond to antibiotic therapy
• pain in the areas you describe could also be caused by TN (trigeminal neuralgia) - branches of the trigeminal nerve innervate all the various areas you mention
• TN pain could be tempered by a course of steroids (but it may take a bigger dose than your GP ordered)
On a Sunday, I guess I’d plug trigeminal nerve pain or TN into the community search engine here on the forum (at the top of the page) and see if what other people have described sounds at all like what you are experiencing. It’s a common problem for PwMS so you should find quite a few discussions - and probably links to outside sources. TN is usually treated over the long term with one of the drugs from the anti-seizure group. Many have proven effectiveness against nerve pain.
Either way I’d also notify your neuro/MSologist tomorrow and get his input. Your diagnosis is very new so I think it’s a good idea to run just about everything through that office. Hopefully they have a nurse screening patient calls who can offer help, note new symptoms in your chart and present significant concerns to the doc for his direction.
If they don't want you to report between visits they will tell you (I'm sure of that!). If they are uninterested in helping a newly diagnosed person learn the ins and outs of living with MS - or are unkind about relaying their rules concerning when to call the office - I'd start looking for their replacement as soon as possible. Yup, there ARE docs out there who care and WANT to help you + know what they are talking about. Most are even accepting new patients :)
Sorry for the repeated information. I was slowly composing between MS limitations and a MH window that kept freezing up on me. Looks like DV beat me with a bunch of excellent advice.
The ER is probably a good idea. I’m not confident they will jump into action as fast in your case as they did DV’s. They might also question why you are “treatment shopping” when you already have untried scripts in hand from your GP. (Please understand! I’m NOT saying they SHOULD question your motives - ONLY that you need to be prepared for the very real possibility they will.) But maybe I’m putting too much of my personal ER experiences into this consideration? Only you can know how likely a positive outcome is when visiting your local ER for general or MS related concerns - OR if your problem seems significant enough to seek immediate ER intervention.
Please let us know how this progresses and how you are doing.
Arrgh I should dump my PCP I know it, but shes so sweet. However sweetness isn't what you need when you are sick!! I need an effective treatment. I think you are right, I have no drainage, my nose is not blocked, so to me no sign of sinus infection. I wonder if I should stop taking the antibiotics....
I knew it, I didn't think the oral steriods would help (she really *****, glad I rejected the offer). She didn't even look in my eye.... she just did nothing... I'm mad about it thats $20 for nothing! 10 for the visit and 10 for the drugs. Glad I didn't get the steriods.
Thanks so much for all of your help, I think I will do what you said. I'll call my neuro again tomorrow and tell them what happened with my PCP and that I can't see the eye dr till the 22nd. Maybe my Neuro will have a good plan of action. If it gets worse before then I'll go to the ER. Right now painkillers are helping so I'm pleased for that.
Maybe I am too sweet. I'm not calling it an emergancy but I did call my neuro again this morning and I am waiting on him to call me back to tell me what to do. I feel the blurriness is getting worse. Before it was like I couldn't focus and wasn't all the time and now its more constant. My eye feels dry but its not and it hurts like achy/stabby all round my eye. Argh, I'm so fustrated. I worry I am over reacting and that I shouldn't do anything too drastic like go to the ER but if not word from my Neuro by tonight, I'm just going to go...... :(
I called the eye dr again and he's got me in for 8am tomorrow morning. So hopefully I'll get some answers then... I'm ok at the mo. I drove to work and I'm typing so I think I can survive till tomorrow. Glad I called the eye Dr again. I asked if I should go to the ER and they suddenly had an opening so I don't have to go to the ER :)... Yet....
Excellent strategy! An eye professional is probably the one best able to determine the cause of your symptoms anyway. It makes no difference if you planned it this way or if things just ended up working out well. This is the type of info we learn along the way about how individual offices function and then keep in mind for future reference.
Is this your first time to see this doctor? What type of eye doc is he? Ophthalmologist, neuro-ophthalmo, optomitrist.......
Just wondering if he will be able to order IVSM if needed or if he would defer to your neuro. Time will tell.
Rest your eyes (and body) as much as you can until tomorrow.
Frequent breaks from the computer are especially critical. (I know.... that can't always happen at work. Do what you can.)
Did you get any answers. It does sound like the trigeminal nerve and perhaps the optical nerve. Both can be triggered by a sinus infection. I had a horrible sinusinfection that was causeing problems with these two nervs. My ENT put me to sleep and flushed it out and suddenly the MS symptoms went away within 24 hours!
If you don't like the help you get, keep digging and asking. Keep us posted!
No answers yet but hoping the Eye Doc will help me tomorrow. He is Ophthalmologist and will prob refer me back for treatment to my Neuro. I think its ON, My color in my left eye is now less vivid. I just noticed it a minute ago and its worse with red. I'll update you all tomorrow once I have seen the Dr. I really hope I'm not imagining things, I would hate to think I am over reacting.
If it is ON, I'm relapsing 6 months after last attack. My first attack was 3 years ago and then the second over this xmas. Can this really be my third ??? :(
I have had 4 in one year. I and my Neuro thought I was having one in January. After a sergical soultion to -the strep that causes punemonia compacted as a solid in two of my right sinus cavities,- it was just a sinus infection. You need to remember that any infection in an MS patient is not "just" an infection. They can worssen symptoms. Also, the trigeminal nerve and optic nerve can be directly affected by the pressure of swollen and full sinuses.
I am praying that you get the correct answer today!
So my Ophthalmologist thinks its O/N but not severe enough for the IV steriods. I agreed, no need to suffer if its not that bad right? I'm seeing the Neuro tomorrow he wants to see me :(:( not sure why? Maybe he cares...
I'm depressed about it all and want to hide another my bed covers. Another attack 6 months after Dx attack. I was hoping for another 3 year break!!
Thanks for all of your kind words and support. I am not crazy, there was something wrong.
bubbles, i just read all this, and i hate that your Gp, Pcp treated you so lightly. i have crohns disease (auto immune disease--inflammatory Bowel disease)..and couldnt get a diagnosis for SO LONG, because of my GP. She let me bleed for months and months, telling me i had a stomach flu,... anyway, i have learned that we must be "pushy" and demand treatment, as i would not be in such a severe catagory had she sent me for a scope sooner. uggg. i hope you got your eye sorted? is it bettter>? being sick *****! Hang in there all! <3
The last time I had ON I was not treated with IV steroids either because it was mild. From what I understand, steroids will only help hasten recovery but won't change the outcome. If your in pain or can't see well, I can see the importance of IV steroids; however, if you're not (like me--some pain that was helped with Tylenol and vision somewhat blurry but mostly noticeable at night), then this seems like a reasonable response.
For sure, it's good to have your doctor follow this. It could worsen. It's also good information for your treatment to know you have ON and whether or not it is worsening, etc. If you're getting several relapses a year, your neuro may need to consider a different treatment.
Here's why I think your eye doctor's plan may be reasonable:
Just read through this myself. Thanks, chef, for pulling it back to the front page. In June, I was enjoying that remission that bubbles was hoping to find. Now I am back in the Dx hunt, as I am back in pain, among other things. Pain behind the eyeballs -- left one especially -- that worsens with movement.
Bubbles, if you read this, did you get an answer back in June? Did you get appropriate treatment, and was it effective?
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