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Double Vision
44 days ago I woke up with double vision and a rash on my arms and legs. The next day my eyes were crossed and completely dilated. My arms and legs were tingling and my teeth were numb. I went to the ER and had 3 MRI's and a CT scan to rule out brain tumors, MS, aneurism, and a stroke. The CT ruled out a sinus infection issue as I was suffering from a sinus infection during that time and took sudafed and Mucinex to treat it. After the ER couldn't find anything wrong, they sent me to an Ophthalmologist who suggested the sudafed was the cause and he sent me to a neurologist. The neurologist tested me for myasthenia gravis and ruled that out and sent me to a neuro-ophthamologist who was of no help to me at all. I have had numerous blood tests that ruled out inflammatory issues, infection, mercury poisoning (through blood work only), lymes disease and west nile virus. Day three of this was the beginning of a week and a half of throwing up non stop and a fever. I am now able to hold food down, no fever, no rash and the numbness throughout my body went away after a month, but my double vision is still occurring. The doctors say it is a waiting game now. Has anyone gone through this??? I can't drive or work and I'm afraid this might be permanent.
I just thought I'd chime in here. I have been dx wih MS since October, 2003. It started off as optic neuritis, nystagmus and a lot of other stuff. Once I got that under control, I was pretty much in remission for many years. Things have started to change for me now, though. I have been dealing with Double Vision for about six months now. I have seen some improvement in the past month. I have been to a neuropthalmologist and he say there is nothing he can do for me. I am anxious to get back in to my neurologist's office to see if she thinks steroids are an option. Anyway, I am thankful because I know it could be worse. I am, however, afraid to drive great distances and this has taken away some of my independence.
One more tip: I was told that the nurse (NP, I think) who did my LP in the neuro's office never needed the fluoroscope, primarily due to so much practice. She reportedly did something like ten per week. Mine was absolutely painless, IIRC.
Do prepare with lots of fluids, have caffeine ready, and be prepared to have a regular headache later, but only from inconclusive results! (Some people get answers, though.)
Lulu's right; this is a MiSerable disease.
Do prepare with lots of fluids, have caffeine ready, and be prepared to have a regular headache later, but only from inconclusive results! (Some people get answers, though.)
Lulu's right; this is a MiSerable disease.
LOL- funny we were talking about the same thing. I am learning so much from this illness! I will be thinking about you on Friday!
I had heard they were risky and the Dr that suggested a spinal was very quick to get me out of her office without any explanation, so I was not willing to do it. I probably should have just to rule things out, but my Dr.'s now feel that a spinal will be inconclusive... I had heard that spinal needles were huge and they could cause nerve damage! Glad to know that isn't the case.
Thank you for the info- I am on month 2 of this, so hopefully it goes away soon! I have my homeopath appt on Wed and I just made an ENT appt since I have chronic sinus infections. I actually was just getting over a sinus infection when all of this happened, so I am thinking it may be inner ear or sinus related.
fingers crosses!! I miss driving and working, so hopefully they can fix me soon.
fingers crosses!! I miss driving and working, so hopefully they can fix me soon.
Hi, Laura, an LP is a spinal tap. Haha, I had both of my kids naturally because I didn't want any needles in my spine ;-)
I am going to have it done, though. A lot of people here who have had them done have advised to ask that it be done with fluoroscopy, make sure there are orders for blood to be drawn at the same time, and to drink a lot of caffeine and stay in bed for at least 24 hours. I am going to try to have mine scheduled for a Friday. Lol, I can't win the lotto but I'm willing to bet my LP is inconclusive. At least it will be done and I can proceed from there ;-)
All the best and I'll be thinking of you,
Minnie
I am going to have it done, though. A lot of people here who have had them done have advised to ask that it be done with fluoroscopy, make sure there are orders for blood to be drawn at the same time, and to drink a lot of caffeine and stay in bed for at least 24 hours. I am going to try to have mine scheduled for a Friday. Lol, I can't win the lotto but I'm willing to bet my LP is inconclusive. At least it will be done and I can proceed from there ;-)
All the best and I'll be thinking of you,
Minnie
Laura,
I had eye pain as well as well as nystagmus and eventually Marcus Gunn pupils and color vision/sight loss. All of it, including my double vision did go away after 4 months. I had DV again for a few weeks months later and every once in a while in the morning since. It did go away though and I hope yours will soon too.
Did you get anything helpful from the homeopathic doctor? I've talked to a number of people who've said they've been helped by natural doctors, but haven't seen one yet myself.
Hugs,
Laura
I had eye pain as well as well as nystagmus and eventually Marcus Gunn pupils and color vision/sight loss. All of it, including my double vision did go away after 4 months. I had DV again for a few weeks months later and every once in a while in the morning since. It did go away though and I hope yours will soon too.
Did you get anything helpful from the homeopathic doctor? I've talked to a number of people who've said they've been helped by natural doctors, but haven't seen one yet myself.
Hugs,
Laura
Spinals are no big deal, they numb you, that might sting a bit, and they use a very tiny needle and go in way below where the nerves end and draw some clear fluid out and blood tests also.
The results take awhile but bear in mind that approximately 10% of MS patients test negative for "O" bands, which is what they are looking for.
I agree with JJ, fever is not indicated in MS, MS is an autoimmune disease of unknown origin and the rash does not go with it, that I know of.
Good luck and keep us posted, we all learn from each other
The results take awhile but bear in mind that approximately 10% of MS patients test negative for "O" bands, which is what they are looking for.
I agree with JJ, fever is not indicated in MS, MS is an autoimmune disease of unknown origin and the rash does not go with it, that I know of.
Good luck and keep us posted, we all learn from each other
Hijack away! Any information is helpful! What is an LP? They have been wanting me to do a spinal tap and I am afraid of that, so I have refused. I feel the same way about it- it is too risky to do it and most likely they won't find anything...
Thank you, Laura. I haven't seen a neuro-Ophthalmologist yet. That may be next. My neurologist is leaning toward MS and wants me to have an LP. I am very scared of that, yet it may be a necessary step in solving my odd puzzle. My follow up with my Ophthalmologist is on November 28.
I am afraid that the LP will be inconclusive. Not that I want MS by any means, yet if it is negative it will just throw a monkey wrench into it.
I so appreciate your taking the time to read and write back. I didn't mean to hijack your thread :)
Hugs,
Minnie
I am afraid that the LP will be inconclusive. Not that I want MS by any means, yet if it is negative it will just throw a monkey wrench into it.
I so appreciate your taking the time to read and write back. I didn't mean to hijack your thread :)
Hugs,
Minnie
Have you gone to a neuro ophthalmologist? Since you have the lesions on your brain, they may be able to help. My B12 is on the low level too- it is for nerve health, so I was wondering if low b12 could cause nerve damage in my eyes...
You have a great attitude on this- I am still working on that... I don't think it is MS either- I feel like something caused nerve damage in my body and caused the muscles in my eyes to atrophy. The double objects are starting to get farther apart, so my eyes are starting to look crossed again. I started using my eye patch again to see if that helps strengthen my eye muscles.
Aaargh, I so apologize, but I forgot to say that I have two brain lesions and none in my cervical spine.
Thank you again,
Minnie
Thank you again,
Minnie
I'm sorry, I accidentally posted before I was finished!
I have had weakness and problems with my right side, have had EMG and another test they do during the same session and carpal tunnel was ruled out, although there was an abnormal needle result that suggested something neurological is going on. I have also been tested for Thyroid, diabetes, vitamin deficiencies, and the only thing that was found is that my B12 is on the lower end of normal, so now I get shots.
I'm sorry this is so long, but your vision issues are so much like mine I thought that it couldn't hurt to at least ask.
Thank you very much for reading.
Hugs,
Minnie :)
I have had weakness and problems with my right side, have had EMG and another test they do during the same session and carpal tunnel was ruled out, although there was an abnormal needle result that suggested something neurological is going on. I have also been tested for Thyroid, diabetes, vitamin deficiencies, and the only thing that was found is that my B12 is on the lower end of normal, so now I get shots.
I'm sorry this is so long, but your vision issues are so much like mine I thought that it couldn't hurt to at least ask.
Thank you very much for reading.
Hugs,
Minnie :)
I don't want to hijack this thread, yet debt, I have the same exact vision issues you have, including the reds. Before this summer, my vision was perfect and I did not even wear glasses.
I am undiagnosed, just started the process a few months ago.
My neurologist had referred me to an Ophthalmologist, who determined I have convergence insufficiency X (T) and refractive diplopia and a 60% decrease in reds in one eye and slight red/green color blindness.
Deb, did your vision issues strike suddenly? Did you have ON? Are you diagnosed?
My Ophthalmologist did request diagnostic results and evaluation of MS and MG from my Neurologist. I am being scheduled for an LP.
I am undiagnosed, just started the process a few months ago.
My neurologist had referred me to an Ophthalmologist, who determined I have convergence insufficiency X (T) and refractive diplopia and a 60% decrease in reds in one eye and slight red/green color blindness.
Deb, did your vision issues strike suddenly? Did you have ON? Are you diagnosed?
My Ophthalmologist did request diagnostic results and evaluation of MS and MG from my Neurologist. I am being scheduled for an LP.
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Hi there,
For what its worth i dont think its MS because you had a fever, vomiting and a rash, which is more typical of things like infections than what happens with MS. Hmmmm if the diplopia is temperary or perminant I think depends on the cause, when you had your eyes tested, did they actually mention finding any abnormalities, that would explain why you have dipopia eg ON, nystagmus etc?
I have diplopia 24/7 because i have nystagmus, on top of a slightly pale optic disc, over time what i see has split slightly further apart, it use to be like a shadow effect. Print for example was one image just slightly above and to the side of the other sort of like a bad photocopy but now i mostly see hieroglyphics eg H = #, I = II etc. Caps and numbers are worse, digital is a guessing game because you basically loose the shapes and i need shape to work it out. Its weirder than weird but when i'm tired or hot, i'll look at someones face and they will have another set of features above their usual ones, lol another set of eyes on their forhead, tre freaky!
I should point out that before it became 24/7 it did come and go.
Cheers.........JJ
For what its worth i dont think its MS because you had a fever, vomiting and a rash, which is more typical of things like infections than what happens with MS. Hmmmm if the diplopia is temperary or perminant I think depends on the cause, when you had your eyes tested, did they actually mention finding any abnormalities, that would explain why you have dipopia eg ON, nystagmus etc?
I have diplopia 24/7 because i have nystagmus, on top of a slightly pale optic disc, over time what i see has split slightly further apart, it use to be like a shadow effect. Print for example was one image just slightly above and to the side of the other sort of like a bad photocopy but now i mostly see hieroglyphics eg H = #, I = II etc. Caps and numbers are worse, digital is a guessing game because you basically loose the shapes and i need shape to work it out. Its weirder than weird but when i'm tired or hot, i'll look at someones face and they will have another set of features above their usual ones, lol another set of eyes on their forhead, tre freaky!
I should point out that before it became 24/7 it did come and go.
Cheers.........JJ
For most people the double vision goes away. I still have problems with double vision, but it's not as bad. When I'm tired, it's worse. It also is more noticeable at night and digital displays. Sometimes I have trouble reading digital clocks and rolling tickers at the bottom of the TV screen. I also don't see as clear as I wished at night. I have also had trouble with my eyes crossing--fortunately, this symptom has gone away. I do have a permament black spot in my right eye and when I'm too warm, the red color is washed out in that same eye. Additionally, when I'm too warm, my vision is very blurry--something my eye doctor said was Uthoff's. My vision could be worse, so I'm counting my blessings.
Thank you so much for your reply! I am starting to feel like my vision is getting worse because the farsighted vision is starting to get more intense- the double objects were once closer together and now they are farther apart. My near sighted vision is getting better where I can get close to something and have single vision. Did you have eye pain as well? It hurts to look up and left to right.
I am going to a homeopath next week to see if they can offer an herbal remedy to help strengthen my body so it can heal faster and also to see if it might be a toxin. They are going to do hair and muscle tests to see what they can find. I have also contacted Emory to see if they might be able to help me as well. They have an excellent eye clinic there and I am sure they have a rheumatologist as well.
As for MS, the neurologist had 2 MRI's done to rule that out, so they are pretty positive it isn't MS. I can always talk to an MS specialist to see what they think though.
So after 4 months did your double vision go away? Thank you so much for the words of encouragement- your reply has been therapeutic to me!
Keep me posted on your progress too! Stay well!
Laura
I am going to a homeopath next week to see if they can offer an herbal remedy to help strengthen my body so it can heal faster and also to see if it might be a toxin. They are going to do hair and muscle tests to see what they can find. I have also contacted Emory to see if they might be able to help me as well. They have an excellent eye clinic there and I am sure they have a rheumatologist as well.
As for MS, the neurologist had 2 MRI's done to rule that out, so they are pretty positive it isn't MS. I can always talk to an MS specialist to see what they think though.
So after 4 months did your double vision go away? Thank you so much for the words of encouragement- your reply has been therapeutic to me!
Keep me posted on your progress too! Stay well!
Laura
Sorry you're dealing with this. Not knowing what's going on can be very stressful. While I don't have much advice for you, I did want to tell you I've been in a similar place to where you are now. Went through a gazillion tests and was treated for myasthenia gravis for 4 months even though the tests came back negative (they said that 20% of patients with MG test negative). What they couldn't understand was why I was throwing up and covered in eczema from the waist down.
I, too, started to despair that the double vision would be permanent, but it did slowly clear up. When my doctors threw up their hands and said they didn't know and started suggesting surgeries that made no sense to me I went and got a second and third opinion. Turns out I had a few issues going on that were confusing the situation. Both of those doctors came back around to MS and it looks like that'll most likely be my diagnosis for my neurological issues (after a second set of MRIs) and the rash and throwing up went away when they discovered I'm gluten intolerant and have Duhring's Disease, not eczema as they thought.
There are so many reasons for double vision from Graves Disease and hormonal issues to neurological issues to autoimmune disorders such as Lupus. Some people with Celiac's disease even have neurological symptoms such as double vision and even ataxia. Have you seen a rheumatologist? If you're concerned about MS, have you considered seeing an MS specialist? It can be a long road, but don't give up. Once you get it all sorted out, the search will be worth it.
And while you're searching, you're among friends here. If there's anything any of us can answer or if you just need to talk about things, I hope you'll come back and find us. Hugs,
Laura
I, too, started to despair that the double vision would be permanent, but it did slowly clear up. When my doctors threw up their hands and said they didn't know and started suggesting surgeries that made no sense to me I went and got a second and third opinion. Turns out I had a few issues going on that were confusing the situation. Both of those doctors came back around to MS and it looks like that'll most likely be my diagnosis for my neurological issues (after a second set of MRIs) and the rash and throwing up went away when they discovered I'm gluten intolerant and have Duhring's Disease, not eczema as they thought.
There are so many reasons for double vision from Graves Disease and hormonal issues to neurological issues to autoimmune disorders such as Lupus. Some people with Celiac's disease even have neurological symptoms such as double vision and even ataxia. Have you seen a rheumatologist? If you're concerned about MS, have you considered seeing an MS specialist? It can be a long road, but don't give up. Once you get it all sorted out, the search will be worth it.
And while you're searching, you're among friends here. If there's anything any of us can answer or if you just need to talk about things, I hope you'll come back and find us. Hugs,
Laura
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