Hemiplegic Migraine, MS or migraine?

[KodeMaster]

Hi. This 36 year old female has a history of migraines, including a status migranosus that lasted a month and required inpatient IV therapy for nine days. At first, the ER doctor and my local neurologist thought it was hemiplegic migraine.

Genetic testing is pending results. I had an MRI which came back "essentially normal." LP from April and previous MRIs came back normal as well.

The migraine came on with new onset of left sided numbness, weakness, balance issues, and speech slurring, hence the working diagnosis of hemiplegic migraine.

However, my migraine specialist who hospitalized me did not think it was hemiplegic because "the plegic part is not there.") this is despite me having experienced the above, though the left sided weakness mostly went away along with the speech problem before seeing her.

I also had visual problems, including gray moving streaks, a black spot in my left eye, aura related "sparks" and the recurrence (which I am still getting post migraine) of gray "fireworks" in my left eye when I strain and look to the left.

Not long before I got the status migraine, my back and neck started hurting. Also, from fall 2005, to summer 2008, I had a problem with extreme pain in my neck and shoulder on the left side. That went away before I got the migraines, which started in January 2013. Then I got the said back and neck pain.

I sometimes got some pain in the affected arm and leg on the left side.

I have had problems with constipation in the past and now it started again, right before my hospital stay.

Does this sound like MS? Should I mention it to my neuro, who I see for a follow up on Halloween? I want to make sure no stone is unturned. I found it odd that the migraine specialist did not think it was hemiplegic migraine and thus want to know why I had those symptoms. If not hemiplegic migraine, then I want to know what caused my symptoms.

Thank you,

K

[karryon55]

Hi there, I have suffered migraines for nearly 30 years. I've had good times with them being far apart but bad times where I was getting them every week.

I'm hoping now you know your dx that your Neuro is looking at a good "alternative" preventative medication & abortive one. I'm guessing what you're on is not working that well. I have used Triptans for about a decade now & they were life altering.

I'm sure your aware that migraines are a neurological disorder that can be very debilitating on the individual & the economy. Many people say "it's just a migraine" grrrrr. There are so many variants of migraine as well & so when idiots say "it's just a headache" trip them up with your non numb leg...lol. ;-)

A while back I went through a bad spell of migraines & I was searching for a way to settle them back down. My Neurologist suggested Riboflavin / Vitamin B2 @ 400mg per day. Also Magnesium "Citrate" daily at the highest dose possible. I had heard great things from people about the Riboflavin & some said if they missed a few days they would encounter a migraine.

I did the silly thing & started both the Riboflavin & magnesium at the same time. Don't do that as you don't know what is working & what isn't. It did take 3 months but I stopped getting migraines. I haven't had a single migraine in 5 months. I am continuing on both of the supplements but I've reduced the Riboflavin down to 200mg a day 3 months ago & I'm still migraine free.

I was going to give them up close to the 3 month mark but it was my family who pointed out that my last 2 migraines I had whilst on these supplements were mild & at bedtime so I just went off to bed after taking a Triptan. I had no problems the next day.

It's important with the Riboflavin to keep it in the bottle as light destroys it. The Magnesium has to be "citrate" or a similar premium form so it's readily  absorbed otherwise it causes you to have diarrhea or watery stools. This is because magnesium is found in so many forms & many are used as laxatives.

I never believed after all this time that something like this would work for me. I have been on the same preventative & abortive for 10 years so it's not like anything there could have played a role. I think it's certainly worth a try.

Good Luck with it all.

Karry.

[HVAC]

I have hemiplegic migraines and MS. With the migraine my symptoms subside with my migraine medicine. My MS symptoms do not change with migraine medicine.

Alex

[SarahL2491]

Super news!

[KodeMaster]

Hi. My doctor said I have a migraine variant, just not hemiplegic migraine. I mentioned the back pain, however he paid it no mind. He focused on the migraine diagnosis. My genetic testing came back negative. I trust what he said. Thanks again.

K

[KodeMaster]

Thank you, Kyle!

K

[kwarendorf]

Good luck on Thursday. Keep us posted!

Kyle

[KodeMaster]

Hi there,

Thank you both for your replies. This is good to know.

The MRIs were of my brain only. I have never gotten one of my spine.

I honestly don't know what they checked in my LP except for the pressure and contents. It was in April when they were checking for increased intercranial pressure.

Something odd happened the other night which I read could be a symptom of MS. I cried over nothing for about 10 minutes and then I was okay. When I was a teen I had a couple of odd laughing spells, where I could not stop laughing over nothing. Crying spells have not come about in a long time, until the other night. It ended as quickly as it started.

I tested myself to see how I felt after a shower yesterday. When I sat down just after getting out of the tub, my lower back hurt, even though I was relaxed emotionally. I got up and a couple minutes later, as my body cooled, the pain was gone. Therefore the back pain does not seem connected to the migraines. I also got a little bit of pins and needles and no headache over the past couple days.

Oddly enough, in the past week, my legs and arms were numb ("asleep") when I woke up. No headache, just numbness. I had trouble moving as I woke, and as I got more awake, the numbness went away. It was on both sides, unlike the migraine related symptoms.

Thanks again, I will see what the neuro says on Thursday.

K

[SarahL2491]

I was diagnosed with hemiplegic migraines years ago and yet my neuro that I have now tells me that it was MS.  A true hemiplegic means that one side of your body does not function for a period of time.  Now true that you had this but as Kyle says, they could also be MS symptoms.

Not everyone has LP positives, I don't, and I have MS.  I also had 3-4 neuro's tell me I did not have MS.  I would consult a MS Neurologist.  There are people with MS who have no lesions showing.  You did not say if your MRI was just of your brain or included your spine.  Also some lesions attempt to heal themselves.  

Do lots of research, read all you can, find a good MS neuro, make a timeline of your symptoms and relax, MS is what I call a slow moving train.

Welcome to our chatty little corner of the web.....
Sarah

[kwarendorf]

Hi KM - Welcome :-)

Many of your symptoms could be caused by MS. They can also be caused by migraine. Given your history, both symptoms and test results, I might tend to lean in the migraine direction. That said, I am not a doc.

Is your neuro the Migraine doc? I would bring up as much of this as your neuro will let you. If that is not most of what you describe then you may want to consider seeking a second opinion.

Kyle