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What tests has your neurologist/doctor done on you?

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Kate
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Post  ShelliB Mon Oct 04, 2010 3:51 pm

I've had the usual CT scan, MRI, EEG, blood work for just about everything including lymes disease ect. What else is there? Is there any point in checking for a PFO? Intracranial hypertension? Anything else?

I'm just looking for answers...tired of this...Sad
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Post  pen Mon Oct 04, 2010 4:08 pm

NOne, nadda, not a one.......AND I have fibro, and never had any help at all....

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Post  ShelliB Mon Oct 04, 2010 4:49 pm

That's awful Pen!!! No excuse for that kind of lazyness in a doctor!
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Post  pen Mon Oct 04, 2010 5:23 pm

I know. I got a CT scan in 2000, and the neuro I saw then did the usual cognitive tests, which I flew through.
But since then, nothing. The neuro I see now, who I an due to see in 2 weeks (not sure if i will bother), hasnt ever done any.
I guess he figures the original CT scan will suffice.

As for the FMS. Had blood tests to exclude rheumatoid arthritis, and then the usual tender spot thing.
That was in 2002 and I have never had a days help, medication, nothing.
I have asked the neuro and also my GP, but it seems there are no drs for Fibro.
Well not where I am anyway.

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Post  ShelliB Mon Oct 04, 2010 5:56 pm

I'm so sorry....that's just not right. I hope someday you can find a doctor willing to help you out.

My neuro seems to like tests. I think he likes to make money. He even tested me for carpal tunnel that was never one of my complaints. I just mentioned numbness from the Topomax. Rolling Eyes
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Post  Guest Mon Oct 04, 2010 6:03 pm

a couple here and there. (some not necessarily for migraine, but CNS related)

-tons of bloodwork
-EEGs
-EMGs
-muscle biopsies
-many CTs
-many MRIs
-many MRAs
-brain catheterization

i'm sure there are a few other things out there.

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Post  Paradox Mon Oct 04, 2010 6:15 pm

usual CT scan, MRI, EEG, blood work for just about everything including lymes disease ect.

Ditto. In addition blood tests for rheumatoid, lupus, MS, spinal tap.
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Post  AZgirl Tue Oct 05, 2010 11:51 am

Mine has done CT scans of my brain and did an MRI once, and the most important for me was the lumbar puncture (which diagnosed intracranial hypertension). Never does blood tests.
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Post  estre004 Tue Oct 05, 2010 12:42 pm

Pen - I've had most of all the above. I've had 3 MRI's. I can't believe you haven't had one of those. I thought that was routine.
I never would have known I had a stroke if I wouldn't have had one. After that, they gave me every test in the book and found absolutely nothing wrong with me. The migraine had caused the stroke. That is why I do eveything possible to avoid a migraine when one comes on.
I don't care what that entails as long as I can abort it, because I think they are very dangerous and any medication has to be more healthy than the migraine--we all know they are not just a headache. I just had an MRI a couple of weeks ago that came back normal but my neuro said having 2-3 migraines a week is uncalled for, so we are working on a solution. Your's are much worse than mine. I would change doctors.

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Post  dcook60 Tue Oct 05, 2010 1:04 pm

shelli, i've had just about every test there is, and the sad thing is, they were mostly at MY request. in other words, i've had to be my own doctor/sleuth. nobody cares as much as i do, naturally, that i'm in daily and sometimes hideous, pain.

i do think that a lumbar puncture/ spinal tap would be reasonable to do. but you must be prepared for "equivocal" results. also, perhaps it would be best to do it in a hospital outpatient setting, where the needle can be guided with fluoroscopy (i think that's how they do it......it's been a few years).

unfortunately, of my four taps done over a two or three year period, the one done by guided imagery was the only one messed up totally! that's because students were doing it. i should have hopped off the table, instead of allowing these clowns (sorry, radiology students) to continue.

there was NO PAIN, with any of the four taps. the thing messed up was the REASON for the tap, which was to measure the pressure. they failed to get a pressure. grrrrrr.

of my other three results, 2 were high, but not sky-high, and one was normal. so now everyone is confused, including me, but i'm still glad i had them done. i believe in 'ruling out' stuff, and i've surely had a ton of things ruled out.

what's ruled in? fibromyalgia, chronic daily migraine, vasomotor and allergic rhinitis, multiple chemical sensitivity, and a few other things with no good treatments. drat. dianne

p.s. i also had a huge workup for a PFO. mine was so tiny, it was decided to not fix it, as the cure would be worse than the problem. if you have aura with your migraines, then i think it's good to find out, with a non-invasive test like.....oh heck, i can't think of the name of it now.

but there is a test. my pfo was found accidentally, when i was in the hospital for something else. i have never had an aura, and those are the people for whom the pfo is more important. naturally, if one has heart issues, then it would also be important to assess.


Last edited by dcook60 on Tue Oct 05, 2010 1:08 pm; edited 1 time in total (Reason for editing : addition)
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Post  sherri b Tue Oct 05, 2010 5:24 pm

Kinda Ironic that I stumbled on to this conversation tonight. I just called my neurologist yesterday, (tired of the stinkin' pain) I requested another mri because I told him I feel like there is something in my head that shouldn't be there.

He said he can't just order another mri without another evaluation.... so I am on the list for a cancelation.

I think I'm wasteting my time............................
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Post  02R96 Wed Oct 06, 2010 4:19 pm

Most of these I've had multiple times:

Xrays, Head CT's, MRI's, MRA's, blood tests, mobility tests, eye exams.

Ten years of searching with no conclusive results.
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Post  pen Wed Oct 06, 2010 4:56 pm

Linda,
Sadly in the UK, it isnt always a case of changing drs.
I have seen 6 different GPs. 4 different neuros.
In different hospitals. I dont know if it is money or what, but they have all insisted.
MRIs are only necessary if the CT scan suggests further investigation.

Not sure mine are worse than yours. They come every 4/5 days regardless.
Although in August I went 9 days.....
BUT I think your medication works better than mine.
When they finally pass the inhaler, I will ask to try it.

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Post  Kate Wed Oct 06, 2010 6:37 pm

The nuero that I saw only did blood tests and the usual office stuff. If you can believe it, she never ordered a scan of my brain. She pretty much just handed the m patients Topomax.

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Post  sherri b Wed Oct 06, 2010 7:04 pm

How sad that these doctors don't take the time to care! I was laying in bed the other night thinking, they must have a list of medications they try on us!

We are guinea pigs! That must be why they call it a "practice" ( the drs. office)

My neurologist showed me my disk after I asked him to please look at it again thinking he might have missed something. I asked him what the cloudy areas were, small spots, he said " those are migraines" Can you believe that? THat you can actually see them and they can't do anything about them????????
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Post  Guest Wed Oct 06, 2010 7:23 pm

wow pen, that's really nuts.

CT depending on the machine gives relatively low yield. If it's a high end Toshiba Aquilon One, you can get some very, very good results as it's a 360 slice machine.

MR is the best. CTs done at least at my hospitals are just done primarily to rapidly check for obvious things like clots or large masses in the ER setting.

Otherwise, MR is the diagnostic tool of choice to check out the brain. The stronger the magnet, the better the results. With all of your pains in your spine and neck, MR would be excellent to see what's going on. i wish your docs would help you.

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Post  Mule Kick Wed Oct 06, 2010 11:58 pm

Migraine wise? . . . . . . none!

Blood tests for liver function, because of acetaminophen use.
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Post  estre004 Thu Oct 07, 2010 9:00 am

It amazes me too Sherrib. I like your comment on "practice".

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Post  dawn.binks Thu Oct 07, 2010 1:54 pm

sherri b wrote:How sad that these doctors don't take the time to care! I was laying in bed the other night thinking, they must have a list of medications they try on us!

We are guinea pigs! That must be why they call it a "practice" ( the drs. office)

My neurologist showed me my disk after I asked him to please look at it again thinking he might have missed something. I asked him what the cloudy areas were, small spots, he said " those are migraines" Can you believe that? THat you can actually see them and they can't do anything about them????????

sherri, the white patches shown up in the scans are the result of the migraine and not the migraine in progress, we all get these patches throughout our life whether we have migs or not but mig pts get a lot more!
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Post  pen Thu Oct 07, 2010 2:02 pm

You are in England Dawn. What tests have you managed to purloin out of the Drs...??

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Post  dawn.binks Thu Oct 07, 2010 2:14 pm

i wasnt commenting on what tests id had but on what sherris mri meant with the white patches.
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Post  pen Thu Oct 07, 2010 3:04 pm

I know that Dawn, but I seem to be out on a limb here compared to our American friends.
Is it just me, or is it pretty normal in UK to not have MRI?

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Post  dawn.binks Fri Oct 08, 2010 2:28 am

3 out of the 5 of my siblings who get migraines have had mri scans NOT TO DIAGNOSE MIGRAINES but to rule out anything more sinister when there were more neurological symptons. an mri is not needed to diagnose them there is a list of symptons to use so i dont think it is a problem that you havent had one just to try and diagnose them pen but whether you need one for your additional problems with neck etc thats different. its worth posting on the m.a site though to ask others.
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Post  pen Fri Oct 08, 2010 4:14 am

Will do Dawn, thanks,.

sunny

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Post  sailingmuffin Fri Oct 08, 2010 5:08 pm

Hi All,

Ok, Well over the past twelve years, I think I have run the gauntlet of tests for migraine:
-bloodwork
-5 MRIs - all to rule out more severe problems, one done emergently to rule out stroke
-CT scans- multiple- I often lose speech during a migraine and this causes drs to freak. (did I mention my dad is a radiologist
-EEG-3 normal, 1 sleep deprived mostly done to rule out seizure from fainting
-nerve blocks-to test if radiofrequency would work (it did}
-Stimulator trial

For fainting-
-2 Tilt tables
3 EEGS
Blood tests
holter monitor.

These are the big ones that I can remember done over 13 years.

Pen, if you have never had a CT, it might be indicated. It is usually done to rule out any organic cause of migraine. However, that may have been ruled out. I am not sure of the procedure there. I just know that I tend to scare drs, who are afraid of strokes.
MRI- also done to rule out stuff.

Dad was the head of radiology here- if they could take a picture of my head when migraines started, they did. I still remember Dad coming after my first CT and saying- "Wow, you know we could see your circle of willis with this machine. It was a new CT scanner. He just thought it was cool that they could see that as they used to have to do arteriograms to get that kind of infromation. Sorry, I come from a family of drs. I passed out at my cousins wedding reception and all my uncle's roommate could do- he was also a dr- was say "Wow, I have never seen anything like this before. I mean, Earle told me about it, but this is so much cooler! Only my family would respond this way.

So, I have had every test in the book. The answer- New Daily Persistent Headache and Neurocardiogenic Syncope/POTS.

So some tests show a lot, some rule a lot out. Either way, I am kind of stuck dealing with both horrendous disorders. I am not sure if you are missing much or if your dr has the right idea.

Pain free days,
sailingm

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