What tests have you had done?

[JayEm]

I suppose this is mostly for other people stuck in limbo, although I'd be curious to hear from people who have gotten diagnosed as well.

I'm thinking not just of things like blood tests and MRIs, but also of tests people have mentioned their doctors doing during office visits.

I guess for me, it's noticing that there are a lot of things that seem as though they'd show something wrong with me that just haven't been done. When I mention the numb spots, for instance, my neurologist taps the middle of my palm--one of the few spots that is consistently *NOT* numb--and ignores things like my finger tips (the most annoying numb spots because I need sensation at the ends of my fingers to do anything requiring fine motor coordination).

And it wasn't until I'd been seeing doctors and complaining about feeling like my brain wasn't working for at least 12 years that a doctor thought to send me in for a neuropsychological assessment (which determined that yes, I appear to have deficits from what I should have... but because there was no baseline of my own normal, there's no way to be sure how much was lost).

I really want to figure out what I have, in the hope that figuring it out will mean I can slow down how sick I'm getting. Okay, sure, my issues have built up over the course of 15 years (counting from when I first started losing balance and gaining fatigue) or 18 years (counting from the first bout of double vision). So it's not like there's been a *rapid* decline. But if there's something that can reduce the decline or (really hopeful) reverse it, I want that.

[lusciousleaves]

Great minds think alike? I was going to post this same question yesterday. That and, you described perfectly the sentiments of someone living through this in limbo. Bull's eye.

Since mine showed up during the time I was running a fever, they did a thorough workup for fever of unknown origin along with neurological testing.

I'll just list the neuro related tests, otherwise your eyes will glaze over:

MRI of brain, c-spine and t-spine
VNG
EEG
VEP
Visual field tests
NCV of upper extremities

I've also had cardiac related testing, chest x-ray, urological testing, mammogram, multiple endocrine studies and GI testing.

There isn't much that hasn't been poked, prodded or investigated. The good news is, other than the neuro issues, I'm an incredibly healthy person.

[jessica_]

I was just recently diagnosed about 2 weeks ago but I've had:

MRI brain, all parts of spine
EEG
Memory Testing (Which I failed horribly, I have to go see a neuropsychologist, or something like that.)
Spinal Taps

I think that's it I probably forgot something.

[JerryD]

You all mention pretty much the same tests, more or less. These tests seem to be physical in nature. What about the chemical aspects of the body. Who knows what their vitamin D levels are? How about hormone levels? If you have fouled up levels, these levels have a lot to do with your wellbeing. There's also a question of food sensitivities / allergies. These are also a component in your feelings of wellness. The testing is not complete with the neurologists testing, only. It's like testing blood when your leg is broken.

[JayEm]

JerryD, that's a good point. Once I finally got a good GP, she did test my blood levels as part of a routine physical, and found deficits in Vitamin D, B-12, and iron, all of which I've been treating for 3 years now (and as long as I watch my diet and take my vitamins, those levels are now well in the normal range--disappointing to me, because I'd had good hopes for treating the anemia being the key to getting better--alas, all that did was reduce my heart rate).

My thyroid and other hormones have all come out where they ought to be, and I don't even have pre-diabetes (for years doctors tried to insist that I could only have vision problems or numbness because of diabetes, in spite of the fact that I don't even have the early signs of it, and the only times my blood sugar was high was when they hadn't told me they were going to do a blood test and I ate lunch half an hour before they drew blood).

I am being treated for allergies, and responding well to that, and I've kept track of my diet for years in the hopes that that would be a key to feeling better.

I think I will be more assertive about asking for a spinal MRI. I've had a couple of brain MRIs come out clear, but no spinal MRIs have been done, and given my symptoms, it seems like something to check out.

I think they did VNG at the ear doctor, which determined that I've got a delayed auditory brainstem response, but everything else came out normal.

It's possible that I had NCV along with the EMG the neuro did last month; I know he tested for myasthenia gravis and carpal tunnel, but he didn't give me copies of the results, so I'm a little vague on what, exactly, he tested. All I know is that the tests came out normal (and that I don't have carpal tunnel or myasthenia gravis).

[lusciousleaves]

Funny, I've not seen a specialist yet that was interested in my Vit D level. Only the GP was. Maybe because they view my general well-being as his domain and not theirs? It could also be because they haven't labeled this disease process yet. Maybe those things come later, after dx.

[jessica_]

Yeah I forgot to mention my vitamin d levels are low. Im taking vitamin d everyday.

[JayEm]

I'm still trying to decide whether I want to keep seeing my current neurologist. He's got a horrible "bedside" manner, and seems incredibly dismissive in person, but he's also the first neurologist I've had who wanted to get current bloodwork (including things like vitamins) and the first who suggested seeing an ENT and neuropsychologist.

I guess I'll see what comes up after my follow-up in July. If he continues to maintain that there's "nothing wrong, you don't need to see another neurologist or any other type of doctor," then I'll find someone else.

[jessica_]

If youre not comfortable with him I would switch. Im currently on my second neurologist, my first was a pediatric neurologist he was to focused in put me on different drugs then figuring out what was wrong with me so I switched. I am very happy with my decision.

[thewildrose]

tests over 12 years

Hi JayEm - I have had, over a 12 year stretch:

Op test that showed ON - since resolved pretty well
EVP showing slowed reactions
MRI in 2001 - inconclusive shadow - 2003 - no change - 2012 beautiful - no visible lesions
neuropsychologic testing - cognitive probs - stated I couldn't work more than another 5 years (in 2003)
LP - Obands and high Igf
Over $1500 worth of Bloodwork - only showed low Vit D
and new Bloodtest from Glycominds (results not in yet)

Diagnosed today based on neuro history and LP

I don't think my neuro back in 2001 would have dx'd me - if you don't feel comfortable, change.

[JayEm]

I've had three neurologists thus far.

The first one was really horrible and unhelpful. The second one might have been ok, but the trip to see him and the wait between appointments and the inconsistency of his opinions between appointments... all of those added up to it not being worth the trouble to try to work with him.

The current one... I can't tell whether it's a bad bedside manner or whether he really isn't going to be helpful. I'm willing to put up with a bad bedside manner, and while he's still doing tests that might find something, it's worth it to me (particularly because his practice is located 15 minutes from my house, in the same building as many of my allergist and ENT, and it's reasonably easy to get in for appointments).

I'm partially feeling impatient to figure out what's wrong, and willing to wait it out because my symptoms started so long ago and they aren't getting worse so fast that I feel like another few months will make a difference.

thewildrose: I'm both sorry and glad that you got diagnosed. I know I'm kind of hoping for all of us that we get diagnosed with something curable, but at least you know for sure and can hopefully start treatment.

[woodstock]

Tests this past year...so far:

Multiple blood tests for everything imaginable. Ruled out MS look-alikes such as Lyme disease, B12 deficiency, Vitamin D deficiency (mine was slightly low, but not signficantly), iron deficiency, thyroid, etc...

MRA at the ER where my pcm referred me as my first sx was slight numbness on the right side of my face that spread to my right hand, leg and foot. This was to rule out a possible stroke.

EKG
MRI of the brain - one in the ER last June; one follow up at the end of October (unchanged) that showed five lesions, two measurable. Next one scheduled for mid July.
Cervical and Thorasic MRIs - last July both showing no lesions there.

Spinal Tap that helped to confirm the dx of MS.

Neuropsych exam scheduled for next month.

Before MS...thyroid and other blood tests several times due to fatigue (negative); sleep study for fatigue (negative); spinal MRIs due to back and leg pain attributed to two bulging disks at L4/L5 and L5/S1 and possible bursitis.

[tambrown]

I've had so many tests I don't know what all was done but I do know my vit. d was a low normal I now take 10000 iu each day noticed increase in energy ,oh I take d3 ,my tests were done 6yrs ago .

My pcp said it's got to be ms because of sx and you've been tested for everything else . I started with 1 lesion then6 yrs. later I have numerous lesions.

I now have diabetes but it's under control with diet an oral meds. I still have no official dx but My last two mri's have showed no change . I've been chasing a dx for along time . Was'nt even concerned until the numerous lesions came up . I felt kind of panicked but I'm only angry once in awhile now.

I guess it could be worse . I'm miserable right now I really think it could be another flare . lots of sx an I hunt an peck to hard to type all that stuff , nothing all that odd compared with what some others are going through .

I do believe I've got a mild case since my normal went back to normal after about a yr. That gives me hope I might get back there again . I'm rambling on and for got where I was going with this . LOL anybody else been here ? Lost in their own brain ?

Hope everyone has a wondreful 4th of july . take care and God Bless ,Tammy

[landspike]

Tests done

I've had the following tests so far:

Brain MRI's
CT Scan of the chest
EMG
Vascular tests
Frequent blood test: thyroid, hormone, CBC
Eye exams to test for pressure in my right eye and double vision
Upper endoscopy due to difficulty with swallowing
Neck ultrasounds every four weeks to monitor an enlarged lymph node which keeps on growing but it is normal in shape

[MorethanaDX]

Tests etc

I am not sure when or who gives the final DX

After 20 plus surgeries and procedures over years, and 3 rd IM specialist so far has:

MRI of brain- shows thinning that is consistent with MS with clinical
electronic nerve tests on my four extremeties that couldn't confirm my numbness
Blood work showed only low vitamin D and slightly elevated glucose
Torso cat scan and ultrasound are inconclusive so doc wants exploratory surgery
Have had numerous upper and lowers that are sometimes showing blocks sometimes not...doc wants another
Eye exam shows blurry vision that can't be fixed or explained
All MRis on back - many led to 4 back surgeries including 3 fusion levels, but don't think neurosurgeon looked for why just they were all emergent- done within 24 hours if scan
Neck and shoulder MRis can't explain why I can't move neck or right arm doesn't work

When and who calls it and we move forward? The doc wants me inpatient...after 40 odd stays at hospital I don't want to go. I have an hour clinical Friday, neurologist and general surgery in 2 weeks.

None of this changes the symptoms I have had do many years. It's been. 7 years since I held a real executive position...and I have 4 kids at home still.

When is it definitive? For the past year and a half they won't even allow pt because they don't know what could damage me. And it's been that long since they pulled driving (docs) for inability to pass reflex tests or explain falling or predictability.