MS Mimic

[aura3]

Hello to all.  

I haven't been on much lately due to Internet issues.  I have been eagerly waiting to give you all a update.
I have been DX with Complex migraines.  All test have come back negative.  I did have a slightly high ANA but was told it is nothing to worry about. My work up was a complete Mayo Clinic work up.

Does any one know anything about Complex migraines? If so please let me know, any info would be helpful. The internet doesn't seem to have much out there.

My Neuro explained that the symptoms I am feeling are an exact mimic to MS Symptoms.  That is why, after searching my symptoms over and over again, MS was all I could compare them to. For now, I am just trying to do some research on Complex Migraines as well as keeping a diary of all the logistics around the time I feel the first sign of a migraine coming on. To find the triggers so they can be avoided in the future.

I had just thought I would share with all of you that complex migraines are a mimic to MS.

I did have one question for Quix,
If after all testing, everything came back negative is there still a chance that in the future that I could have MS? Just because nothing has shown up now, could something show up in the future?  I am assuming there is still a slight chance, but thought I would ask.  Since my Brother has MS and after putting my family through the last 6 month I just thought it was worth bringing it up:)

And as for all the eye issues that I have had it seems to have been migraine auras.

So for now I am going to take it one day at a time wait for my symptoms to easy up.

God Bless,
Aura

[Momzilla]

Hi!

I don't know what to say.  It's so tough because your tests are fine.  Like mine.  Oy.

The thing which is troubling to me is the exhaustion that precedes these episodes, the heat intolerance and the trigeminal neuralgia.  I just don't think they fit with the complex migraines.  And being the sibling of an MS patient does increase the likelihood of you having it just a smidgeon  I think just 5%.  

However, your symptoms DO fit the complex migraine "look," although I'm not sure you meet the criteria.

Could your doc be grasping at straws with no tests to point to MS or something else?  I think mine is.  He pretty much told me that the episode I had last year was related to a migraaine when it was not.  And last year, my weakness was in just my legs, not one-sided.  I realize it's tricky for doctors to come up with answers when nothing is showing up in the testing, but it's just wrong then, to try to cram square pegs into round holes.  Just say you're not sure of a diagnosis yet.

My doc told me it must feel strange to finally have a diagnosis, when no one had been able to tell me what was wrong before.  I think he WANTS to be the one to finally have my answer.  But he doesn't even remember enough about my symptoms from one appointment to the next to even have a good picture of who I am.  Why do I have hyper reflexes?  That's definitely not part of migraines.  So, I take the new medication he's prescribed, so if I have another attack (relapse?) I can say -- I tried it your way.  You're wrong about this.  I don't know who I'm fooling.  I just have to wait for some MRI lesions.

Anyway, try not to obsess to much or stop living your life, waiting for a doctor to take you seriously.  Trust your instincts.  It's just this stupid, aggravating, torturous waiting that's the worst.

I'll hang in there if you will!

Feel well,

Zilla*

[aura3]

It is so good to talk to someone about this. I pretty much have every symptom that you have listed.  All my symptoms started with a mild head ache on the left side of my head. Cased Bell's Palsy symptoms.  Only effected the left side of my face. That was back in Feb. in Mid April I had an extreme fatigue come over me.  I was so weak and tired.  My body felt heavy and hard to mover around. But this was not started by a headache/Migraine.  A week later I did have a weired sensation in my face (aura) but no Migraine. With in 30min the whole left side of my body became weak as if I had a stroke, but was sure I wasn't.  About a week later I started to have persistent headaches that at time turned into Migraines. I was given Imitrex. Worked sometime but not all the time. During this time I started to have pain in my fore arms and calves on both sides, as well as muscle spasms that would be in various places around my body. So I was put on Lyrica.  I switched Neuros and he switched me to Axert for the migraines and because that one didn't work all the time I am now on Relpax. That Neuro also upped the dosage of Lyrica to 150mg 3x a day. I have had the MRI's that have come back clean as well as an LP with no oligoclonal bands and protein was low not high. He dx me with Complex migraine with stroke-like, haptic, or visual aura, intractable with early right trigeminal neuralgia.
Okay so i still questions this for some reason, not sure why.  I seem to be doing much better since my Lyrica dosage as gone up but I still feel pain. As well as heat intolerance.  My Brother has MS and with all my symptoms pointing to that alone, I started to question if that was what I indeed had.

Let me know what you think,
Aura

[Momzilla]

Yes, Tammy and I posted at the same time.  I didn't see her post.  SHe asked about treatment, and I completely left that out.

Once back from the hospital, I started having some dizziness, or something, i can't quite remember what.  My neuro prescribed Verapamil, which is used off-label for complex migraines.  It is approved for high blood pressure, which I do not have.  My pharmacist says that it is indeed used for hemiplegic migraines.

So, I'm taking it, so if I have another acute episode, my doc will see I've been a compliant patient.  I am following orders, and doing what I've been told to treat migraines.

Have you been prescribed anything new?

Zilla*

[Momzilla]

Hi!  So good to have you back here, and don't think for a minute that you can leave us!!!

Yes, complex migraines are indeed a mimic of MS.  A very tricky mimic.  I am diagnosed with complex migraines.

You'll have to forgive me, Aura, but I don't recall the symptoms you have that made you think MS.  What I can do is tell you some facts about complex migraines as they relate to being an MS mimic.

Complex migraines can produce weakness, numbness, tingling, facial drooping, loss of vision, loss of hearing, tinnitus, pins and needles sensations, vertigo, dizziness, headaches, "flashes" in vision field....  Sounds a lot like MS, right?  The thing about complex migraines, is that in migraines, the symptoms listed (except for the headache) usually precede a headache and are temporary, and completely reversible.

The weakness and numbness and so forth usually are gone by the toime the headache comes, they're part of the aura, which can last an hour to several days to sometimes (but rarely) weeks.  Then the headache phase comes, and it's over.  And a visual aura is usually a part of it.  Very common.  

In only one type of complex migraine is there TRUE MOTOR weakness.  This is hemi-plegic migraine.  All other types may seem to have weakness, because of the numbness, but only hemi-plegic includes true motor weakness that can be observed by a doctor.  (This is what my doc says I have)  Hemi means half.  So, only half the body gets true weakness and other symptoms.   One leg, one arm, one side of the face, and so on.

I had an attack and went to the hospital where my legs were weak (both, but left weaker than right) and my left arm was weak, and the left side of my face began drooping.  My MRI and LP and ALL other tests came out pretty normal.  My doc was really reaching, I think and said complex migraine.  I had TRUE MOTOR weakness.  Hemi did not fit.  Both of my legs were weak.

The docs at the hospital think I have a degenerative demyelinating disease and treated me right away with Solu-Medrol.  They said they think it will eventually show up in testing.  I don't know where you are with symptoms and other testing.  It could VERY well be you DO have complex migraines.  I really don't know.  

This diagnostic process is infinitely frustrating.  I hope I haven't frustrated you more.

Feel well,

Zilla*

[wingnut19]

Hi Aura and welcome back.....I hope your internet problems are fixed for good!  

Wow, Complex Migraines, huh??  I really don't know much about that disorder, but have heard several times that it does mimic some MS symptoms.

I believe Zilla may have some more information for you once she reads this.....

I am very happy for you that you finally found some answers....Did the Neuro mention any treatment plan for you??

Take Care
Tammy :)

[debral09]

I am so glad that you are back!!!!  I know that we have chatted off and on but its good to know that you were not dx with MS!!!!!!!  I was praying for you and hoping that Dr F would find what was wrong!

We'll chat later.  Just wanted to say glad you're back!!!!!

Always here for ya!
Debra