Oh, and I've also had a bubbling/echoing sensation in my ear with loud noises and lots of pressure in my head. The dizziness is not room spinning dizziness but more like a fuzzy head sensation? I also get dental freezing feeling in my lip and face. And I get these unbelievable tired spells, like I'm completely zonked out even after 8 hours sleep and have to go to bed by 8 p.m.! Oye vey!
I can't read your post do to my eye problems too big a block of print.
I have migraine and MS. The difference in migraine symptoms and MS symptoms for me is the migraine symptoms go away with medication and the MS symptoms do not.
I have typical migraine with pain and vomitting and atypical where my left side goes numb and I lose vision in the left eye.
Good morning, here at least...
It took a few years but once I got to UCSF and my DR it only took 4 months for dx's. But I had headaches, not migraine and pain everywhere caused by different things ..not caused by MS most of them.
And my hesadaches lasted for many months, i still get them but not as bad. And I don't know why.
My eyes went from good to bad in 6 mo, cateracts which I have had surgery on since then.
Its all very mysterious...
btw, I couldn't read all of your message, if you break it down into paragraphs or sentences, its easier for us to read. thanks ...
You will get more answers from others but just wanted to fill the empty space..lol
I just copied and pasted my original post and made it (hopefully) easier to read. I apologize, I didn't realize.
About 10 years ago I started getting nausea, dizzyness and blurred vision, lasting weeks. Inital diagnoses, sinus infection, treated with antibiotics for 2 months,
Then another episode prompting a CT scan to rule out brain tumor, negative.
Then a few years later, these episodes got worse, with numbness, tingling in left leg, arm, face, weak leg. All left sided. Diagnosed with "bad posture".
Then another episode, now diagnosed with "migraine without headache" and told there is nothing I can do for this. Frustrating for sure.
These episodes come about 1 X a year or 1X every two years, sometimes with "little symptoms lingering" here and there in between.
I have always had headaches but they don't always coincide with these other symptoms.
Another few years laster and now I get these electrical shock sensations down arm, tingling, burning in legs, double vision etc.
MRI brain and MRI spine, clear 5 years ago. Evoked potentials, normal. EEG< normal.
Now it's 5 years later (have had a few episodes since then but not back to doctor)and my syptoms are back for the last few months, my double vision has stayed for this entire time.
I have been to the optomotrist who did extensive testing and said NO to optic neuritis, optic nerve seems healthy and not scarred).
Tingling, burning, weak left leg, twitches in my eye, forehead everyday for 2 months, headache, nausea. twitching here and there in my legs, arms etc.
Pulsating foot. Also have had several episodes of an electrical shock sensation shooting down left arm, lasting seconds. Once time this also happened in my left leg.
I also get a really sore left foot, sensitive, can't explain the feeling with every episode. So, I'm really tired for this all now obvisouly promting me to go back to my Doc, referred again to new Neuro.
New neuro says probably not MS but another MRI brain in 3 months to rule out MS and if clear, then they are diagnosing me with migraines and putting me on a daily med.
Did anyone else have so many negative tests for MS, then get diagnosed years later with MS?
Can I have a migraine with these symptoms that last for months on end? This eye twitching (not the eyeball, but the actual eyelid) and visible forehead twitching is driving me nuts.
Sorry to hear you are going through all of this.
I have severe migraines 2-4 per week, have had them since around age 11.
I, like you, have had the blurry, double vision. I suggest you see an opothalmologist, a neuro-opothalmologist if possible.
My optic nerves looked okay too,but I had an afferent pupillary reactive defect (which means my pupils did not dilate properly to light), and I had visual field defect, as well as reduced color vision. I was diagnosed with ON....even thought the optic nerve looked fine. It can be that the damage is further back on the optic nerve...retrobulbar optic neuritis.... it can not be seen through dialation of the eye.
I also have had the full, muffled, echo in my ear. The tingling and eyelid twitches too.
I was dx in Jan with RRMS.
Wishing you the best of Luck.
Hi and welcome to the forum! I don't believe we've met before. Love the "lizzyboredom".
Thanks for re-posting your question in smaller blocks for those of us with vison problems. It helps tremendously.
We just had a post and thread very similar to your question. Here is the link:
In answer to your question about negative MS testing then dx later, yes that was my situation. I was also told I could have the symptoms for as long as a month by the folks at the Dizziness and Balance Center I mention in the other thread.
I hope some of this information helps.
Hi, and welcome. I wish I understand the REAL variation of complex migrain without headache (acephalgic). Mostly what I read states that symptoms (which can be very MS-like) can last for days to weeks. But, we have seen this diagnosis applied to symptoms that have lasted many months even more than a year. I have to say, I think that's a crock.
I am going to recap what you have told us. It helps me think. You started having episodes about 10 years ago each of which lasted for several weeks. They all consisted of dizziness, blurred (not double?) vision and nausea. You were diagnosed with a chronic sinus infection which did not respond to antibiotics. How was the sinus infection diagnosed? The best way is by CT scan without contrast.
Then after more episodes you had one with numbness and weakness in the left leg, left arm and left side of face. Who was the brain trust that determined that "Poor posture" was disabling? Dufus...
More episodes and you were sent into the wilderness with "live with it". Boy, all of this sound familiar. And it's interesting that the migraine evolving so much.
Fastforward a little and now you are getting electrical shooting pains down the left arm, with tingling and burning in both legs, and double vision - not just blurry?
Okay, this time someone was really thinking about MS. Full MRI (with MS Protocol?) and evoked potentials, negative. Back to the wilderness.
Now we are three or four months into a new episode with persistent double vision, occasional electrical shooting pain in left arm, both legs tingle, left foot pulsates, random all over muscle twitching (little muscle fibers twitching or big one causing actual jerking of a body part). Also have persistent twitching of the muscle around one eye and on forehead (one side or both?) Headache and nausea.
Does this sore, sensitive foot also last for the duration - several weeks?
I feel a soapbox coming on: An "optometrist" tested you and said that this wasn't optic neuritis. Did he inform you that a normal exam does NOT rule out optic neuritis? That the exam IS normal in 64% of people with confirmed optic neuritis? If he did, I'm dumbfounded. If he didn't, I will say again that optometrists are NOT the people to be diagnosing or ruling out real eye disease. Their real purpose is refraction for the purpose of glasses and they have recently been getting more training in screening for eye disease, but are amateurs. If the suspicion of eye disease is there, they should be referring immediately to ophthalmologists.
So, what did this optometrist say about the double vision? Did he measure it? Could he see any evidence of nonconvergence? Double vision is not a problem of the optic nerve. It indicates a problem in the brainstem with the cranial nerves (III,IV,VI) that control eye movements and work to keep the eyes moving together and focusing on the same target.
I am a little confused about the new neuro. Why is he waiting 3 months to do another set of MRIs? Did he do one recently? If not, why wait?
Did he also do a completely thorough neuro exam? A good one takes a long time, more than 30 minutes often upwards of an hour and includes an exam of the cranial nerves, facial sensation and movement, eye movements, inside the eye, finger to nose to finger, shrugging, tendon reflexes in both arms and legs, many pairs of muscle groups for strength (my neuro does 18 pairs of muscles on EACH side), test for Babinski, gait, walking on toes, walking on heels, tandem walk (baby steps), coordination, etc.
Is your exam normal? I would expect the tendon reflexes in your knees and ankles especially on the weak side to be hyperactive - with the knee really springing out.
I am sure that there are abnormalities on the exam.
Clearly this neuro won't diagnose MS without a positive MRI. That's pretty normal. But, MS is on his mind. Has he begun to do the testing for things that can cause these kind of neurologic abnormalities - what we call the MS mimics? That's important and is usually partly done with a battery of blood tests, like the ANA, ESR, Antiphospholipid panel, B12, Lyme Disease, VDRL, HIV, ACE, and others?
I also hope that the MRIs will be done using proper protocol and that they will utilize the highest power and best MRIs available. This is especially important for the spinal cord which is difficult to image. A 3T machine is really best. I suspect from some of your symptoms that you have spinal cord lesions.
You also need to see a neuro-ophthalmologist to evaluate the double vision. You should see a vestibular specialist (called a neuro-otologist) to evaluate the dizziness and to see if it is central or peripheral.
To find a neuro-otologist go to the Vestibular Disorders Association's site. They have wonderful expanations of dizziness and vertigo.
Before I settled for a diagnosis of Complex Migraine, I would ask for a spinal tap. When both the MRI and LP are negative it does become less likely that the person has MS - though still not impossible.
Yes, you can have negative testing for years and still have MS. I was told for two years that my MRI was negative , when it wasn't - thus delaying my diagnosis. I don't think it happens that often. YOu will see more people with the weird stories here online because the journey is so painful and we gather together. The neuro profession generally denies that we exist which is a constant source of frustration.
I need to go read about complex migrain AGAIN. I just don't see how your case sounds like migraine. But, I am NOT a neurologist nor a headache specialist. I can't say that you do have MS, but it sounds a lot more like MS than it does any kind of migraine that I have read about.
Well, more than half of our members are in meurologic limbo. This is a great place to hang out while answers are being sought.
Yes the dufus who diagnosed me with "bad posture" was a neuro-opthomologist. When I first saw her my symptoms were not as many as they are now, but when a new symptom popped up, the tingling in arms (before was just face), and legs, I was referred again.
This same neuro said "I don't know what you are doing back here I already told him (my family Doc) what I thought was wrong with you, then dx'd me with migraine w/out headache and said there was nothing she could do for me. Awesome.
The vision is double, and persistant. It is mostly on things distant. For example the traffic lights ahead, there are definitely two, they come together as I get closer. And I really notice this on bright lights, like the litle blue light on my PC, there are two. There are 2 half moons out tonight :)
My twitching forehead is the exact same spot, it comes about every 10 minutes or so. THe eyelid, same thing. All the same side. I forgot to mention another symptom that waxes and wanes. A hot sensation on my left foot, sometimes leg. And a fluttering feeling.
The optomotrist was quite helpful in that she did a regular eye exam and then had me come back for a dilation and some other visual field test. She did say that it was something "further back" than she could see. She could not explain the double vision but was to forward her report to my neuro.
My new neuro actually said he was not worried about the double vision that it would be worrisome if the double vision was when looking at things close up (and put a finger in front of me and asked how many I saw). He said he was also not concerned about the eye twitching and said he could not see it now.
The exam with him was about 30 mins. The last neuro I had seen 5 yrs ago WAS an MS specialist who moved out of the province (I'm in Canada) and this new one is not. The MRI is in July because that's how long the waiting list is to get in.
I did have the battery of blood tests done 6 years ago with the previous neuro. The last time I saw her (5yrs) she said she thought we could rule out MS "for now" and said she thought it was something more "cellular". I don't know what that meant, and that was it.
I should mention the dizziness does not bother me like it used to. Previously I could be out on the couch for a few days, hard to walk around, veering to the left when I walked. now I tolerate it for sure. It's more like a fuzzy head thing. Or I feel like I've been drugged?
Sounds crazy to say I just hope they find something on the MRI so that I don't feel like a total nut case! I'm sure you can all relate.
Thanks so much for all your replies. Misery loves company :)
P.S. There is not MRI spine ordered this time. And as for the misery love company, I don't know why it's so comforting to know others are in the same boat. I don't want other people to feel sick but it's nice not to feel alone!
OMG, it's me AGAIN. Although most of my symptoms seem to be on the left side, my right foot often is numb and cold, Very cold, even to the touch.
Wow, our stories sound very similar. I had a series of strange symptoms about 15 years ago - fatigue, numbness on left side, heart palpatations, dizzy, lack of coordination and balance, face pain and muscle spasms. Saw several specialists (not a neuro) and had numerous tests and was told pinched nerves, tmj, fibromyalgia, chronic sinus infection and migraines.
Left to muddle through on my own over the lat 10 years the episodes would come and go. I would take antibiotics (for sinus), or do physio (for spasms), take pain medication, antihistamines (for dizzy).
Fast forward to 5 years ago I end up in ER with what I believe is a stroke - blurry doubled vision, left side numb, heart arrythmia, dizzy, disoriented, slurred speech (my tounge felt frozen like from the dentist). I get the whole stroke protocol - blood, ultrasound, EKG and CT.
I see a neurologist and he says atypical migraines. I see a cardiologist and he says benign heart arrythmia. I am left to manage on my own again with maxalt for the migraines.
I have several more episodes which the migraine med does not seem to work for and new symptoms start to pop up.
Then two years ago my legs and neck seize up. I can barely walk, need to use a cane. Off to Rheumatologist who is annoyed that my doc put me on prednisone (so I could function). Spends 15 minutes with me, pokes me a few times and orders blood tests.
That was it. His report said I was low on Vit D and most likely had Fibromyalgia. So still trying to figure out what this is with no apparent help form the medical community and now I have bladder urgency and frequency to add to my symptom list.
So finally, I switch GP's and see a neuro in feb and have my 1st MRI - after 15 years of symptoms on and off. I get the results tomorrow at my follow up with the neuro.
That's our great Canadian medical system for you! I was told my MRI would take 3 to 6 months but I was in within the week as I asked the hospital to put me on the cancellation list. Don't know if that's an option for you but it sure speeded up things for me. And the waiting is the hardest part.
I wish you luck getting some answers. I am feeling anxious about this appointment but not because I think they might tell me I may have MS. I am more worried they won't have any answers and I"ll be back to square one and have to find another dr.
I have learned so much from the people on this forum. It's a great place to start your search. Take Care, Anna
Dear LizzyBoredom -
I read through your history and found it rather familiar to my own. I was diagnosed with Static Migraine approximately 15 years ago and have lived with that diagnosis. Was told that it was a migraine "phenomenon" not a headache. I was told it was something that I'd have to live with. (My symptoms at the time was a scotoma (blind spot) in my left central vision and seeing lights dance in a dark room.)
Over the years I have now acquired several scotomas in both Right and Left vision, which now flash a white light from each with every blink. I am constantly seeing "static" and "waves" in my vision. My Opthalmologist never seemed to be concerned as the symptoms have worsened over the years.
I had become increasingly anxious re these symptoms over the last few years, because they really effect every aspect of my life. From research I had done on my symptoms, I was under the impression that a Static (or constant) Migraine Aura would typically last a few minutes to days (seldom a month) but NEVER 15 YEARS.
I began having double and blury vision around 18 months ago, which has started my renewed search for the correct diagnosis, whatever it may be. The double vision seems to be corrected for the most part with glasses, but the blury vision does not correct with glasses.
I have also begun having other symptoms like Trigeminal Neuralgia which now is a daily occurance. Muscle twitches and jerks (mostly in my legs and foot) and have had a sqeezing pain around my torso three times in the last three months that stopped me in my tracks, lasted approximately 10 minutes each time.
I began the double vision just over a year ago. I have been fit with 2 pairs of glasses in
I've had 3 MRIs in the last 18 months (all of my head) and a neuro evaluation at a local University Medical Center. The "Neurologist" (In quotes because he was a joke) used the words, "I assure you nothing is wrong with you neurologically". It sure sounds neurological to me.
You explain the "dizziness" or "lightheadedness" something like a fog. I would explain mine the same way. I find myself off-balance regularly (like running into door frames) I am convinced my hairdresser thinks I'm drunk when I stand up when he's finished.
I actually have my first appointment with a neuro-ophthalmologist tomorrow (have waited 2 months for an appointment, the first available) and am crossing my fingers that I walk out of his office having felt he's listening (and believing) my symptoms and willing to at least order tests that I have never had (Visual Evokes and such).
A doctor is UNABLE to diagnose an individual with Persistent Migraine Aura (which is what its now called) withOUT ruling out ALL other possibilities.
Anyway, just thought I'd let you know you're certainly not alone, though there doesn't seem to be a huge amount of people on this forum who's symptoms are quite like mine.
Good luck on your search for answers.