Avatar universal

MS vs Complicated Migraine wrong diagnosis

I just got out of the hospital and am more confused then when I went in. So here's the story....

I have had many episodes of numbness, vision issues, ringing in my ears, weird feeling around my torso, limited movement in my limbs and weakness, along with extreme fatigue. I do have leiden factor five disorder and have had 2 known TIA's because of blood clots approx 10 years ago.

Here is the sequence of the most recent events...

Day 1, I lost feeling in my tongue, left side of my face, and my left hand. I also experienced a fluttering in my eye that drove me crazy and gave me a headache.

Day 2, I decided that the eye issue and numbness warranted going to the hospital (I know, I know) I recieved CAT scan (nothing remarkable). They admitted me believing that I had a stroke. That night I had an MRI done. The results came back no stroke. However the myelin sheath was damaged, they said that they were going to do a spinal to check for MS. No longer had headache, all other symptoms still there.      

Day 3, EEG, EKG, Heart ultrasound, another MRI. was told that they found "many lesions" on the scan. Not told much.

Day 4, Met the Neurologist for the first time, where he told me that he believed that the lesions were from TIA's and that the rest of my symptoms were from complicated migraines. Released from the hospital, but not before the primary DR and the other attending advised me to get a second opinion for MS .

Day 5, Numbness moves up my hand all the way to my shoulder, weakness in my left leg is making walking hard and my left foot is involuntarily turning in. The numbness in my face has also migrated. Again still NO headache.

Before all this a month prior I had vertigo that lasted about 3 weeks. I have passed out due to low blood pressure, and I see "stars' regularly.

It is very hard for me to believe that all this is related to complicated migraine when two other docs wouldn't back the neurologist and referred me to another, to say that all of these lesions were from TIA's and that I only recall 2. The fact that my numbness and dizziness has lasted in the past for up to 6 months.

I am scared and looking for answers, should I be looking further into MS? Has anyone been misdiagnosed before given an MS diagnosis?  
10 Responses
667078 tn?1316000935
I have MS and I have atypical migraine. With atypical migraine I go blind in one eye and my whole left side goes numb. Sometimes I get a head ache other times the other symptoms. Sometimes I have headaches last a week with symptoms.

The difference is now that I have migraine medicines which work is when the medicine starts working symptoms go away. My visions clears up and my numbness and weakness on the left goes away.

My MS symptoms do not respond to migraine medication.

People with MS get diagnosed with just Migraines by accident. I have never heard of accidently being diagnosed with MS when you just have just Migraines. I had a doctor think my MS was strictly migraine but she was a headache specialist and ignored my MS MRIs with legions

Many people with MS have migraines as well.

645800 tn?1466860955
When I first developed MS symptoms I was DX'ed with migraines. The MRI they did showed only that I had abnormal atrophy of the brain for my age, no lesions or any other problems noted. I also was not experiencing any kind of headache at the time.  In fact the migraine medicine actually gave me headaches. LOL

So yes people do get misdiagnosed with other things, including migraines when they actually have MS. I have been misdiagnosed with about half a dozen things before my MS DX in 2010.


987762 tn?1331027953
Hi and welcome to our little MS community,

Unfortunately, misdx can happen but you need to keep in mind that MS has many mimic, and with many other conditions producing similar sx's, working out the correct dx can take some time. With test evidence, the MRI is only one part of determining the dx, lesion location, demyelination etc are heavily weighted evidence but MS produces clinical signs of lesions, so a persons medical history and clinical evidence is also important.  

I generally think with any dx, it's in peoples best interest to get a second opinion, even if its only going to clear up a lot of the doubts in your mind, but with the discrepancy of what you've been told regarding MS, It would be better if you seek a second opinion with a Neurologist that specialises in MS.

That's not to say that MS is the most likely dx, Migraines do cause lesions and similar sx's to MS, as do mini strokes (TIA's) but if MS has been suggested as an alternate dx it just makes sense to me to find out. I'd also recommend you get copies of all your 'prior' MRI's, neurological assessment reports etc because the evidence gathered over time, sx history and changing clinical signs should all be useful in helping to determine what is going on with you.

987762 tn?1331027953
Hi whilst i was looking up something for someone else i came across this on migraine and MS, that i thought might be of some insight......

"Although headache is not a common symptom of MS, some reports suggest that people with MS have an increased incidence of certain types of headache.

One report noted that migraine headaches were more than twice as common in a group of MS patients than in a matched group of people without MS. Other investigators found a prior diagnosis of migraine in one-third of the MS group being studied. A third study found that 20 percent of a sample group of people with MS had a family history of migraine, compared to 10 percent of controls, suggesting that there may be a common predisposing factor to both MS and migraine. Vascular or migraine type headaches have even been reported as the first symptom of MS."


Avatar universal
Those are called hemaplegic migraines (I may have not spelled that right, but the % of people who have them is unusually low.  I was diagnosed with them back in 1981.  My entire right side would go numb along with the eye problem but no headache, thus atypical, but hemaplegic is their name.  I don't feel so alone now!  Someone else I know has them!

Avatar universal
Thank you to everyone for your posts.  I am definitely getting a second opinion.  Lesions alone do not alarm me because like you said they can be caused by several ailments.  What concerns me is the myelin deterioration. Also the fact that here I am over a week out with same or worse symptoms
Avatar universal
Now I feel like my food gets stuck. .. This is the most uncomfortable symptom any suggestions for relief?
667078 tn?1316000935
It is simple but make sure you drink water while you eat and not with ice. Water is better than other liquids. Eat small bites and drink water in between.

Avatar universal
Thank you this helps a lot!
4943237 tn?1428991095
And keep your chin tucked in when you eat as this opens things up as much as possible for food to pass through.
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