NeuroTalk Support Groups - Wrong Diagnosis?

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- - Wrong Diagnosis? (https://www.neurotalk.org/multiple-sclerosis/203957-wrong-diagnosis.html)

Thank you for all of your diagnosis stories everyone! I live in Wyoming if you couldn't tell by my user name. :) So, there's not a lot of neurologists here. When I got Optic Neuritis, I was sent down to the University of Utah's Moran Eye Center. There, they had me see a Neuro-ophthalmologist. So far, she's the only one I've seen. I called their office last night and tonight while I was at work because they never contacted me during the day. I also contacted a neurologist 2 hours away from where I live and hopefully I'll get some sort of phone call by tomorrow. I've noticed the electric shocks get worse the later it gets during the day. When I'm at work, it's when I notice it the most. I'll make sure to keep you all updated!

-happycowsfromwyo

Quote:

Originally Posted by Mariel (Post 1069706)

It took me over 30 years from my first obvious symptoms to get a dx of MS. I was moving around and doing things (sometimes badly) for all that time, so I guess they thought it was "all in my head". Finally I got double vision and after some delay I got an MRI which showed myelin lesions, plus I had other tests like Visual Response, which was done easily in the office. I have no idea if I had lesions earlier. Later I got another dx, Porphyria, and about 50 % of doctors over the years thought I had Porph primarily, 50% thought I had MS primarily, and I think I have some sort of combo. This shows you how "grey" the area of thought may be about the "grey matter" in our heads.
Please try the books on tape or DVD if you are too fidgety to read.
As for the new anti-depressant, I will look it up, but I already know that too much B6 can be a challenge for the nervous system, often for "normal" people as well as people with neuro illnesses. I think more than 15 mg a day is too much unless you are taking it in the form called p5p, which is pre-metabolized. I am not sure 15 mg is too much for everyone, I'm just throwing that out as a sort of rule of thumb I've learned from various doctors and reading material, and harsh experience, over the years.

Everyone around me, except my boyfriend, thinks it's "all in my head" and that I'm crying wolf. My dad told me to start taking more vitamins, eat fruit, and get on a normal sleeping schedule. That it's probably just because of that that this is happening. I can understand how doing that can help a lot, but he also doesn't want me seeing any more doctors. Maybe the b6 is what triggered this...I don't know. I guess I can find out. I'll see what audio-books I can find at the library here.

I went back down to Utah for an appointment to get checked out about my body tingles every time I look left or right. It's gotten better, but when I lay down at night, I notice it the most. They did a lot of touching tests when I went in. They found I can't feel cold on the tops of my hands and that my right side is less sensitive to touch than my left. I don't know what that means. They had me get a spinal MRI and called with the results the next day. They said the scan was "ok" and when I asked if they found anything they said that my doctor was going to look at it and that I needed to get blood work done. I didn't get the paperwork for that til 3 days ago. I got it done 2 days ago and since it's the weekend now, I probably won't know for a few more days what's going to go on. I did get a Diagnostic Imaging Report from the brain MRI and it says:

FINDINGS:
Thin section high-resolution imaging through the orbits demonstrates normal morphology and bilateral globes. demonstrate symmetric signal and volume. There is no abnormal prolonged T2 signal within optic nerves. Postcontrast imaging demonstrates no abnormal enhancement of the optic nerves.
Lacrimal glands demonstrate symmetric morphology and signal.

Orbital vasculature normal.
Extraocaular musculature is normal.
Orbital fat bilaterally demonstrate no focal abnormality.

No diffusion restriction is present. FLAIR sequence again demonstrates subtle linear focus of prolonged signal within right periventricular and deep white matter. The corpus collosum maintains normal signal and volume. Previously identified subtle focus of signal abnormality at the callosal septal interface is not visualized in this exam.
No new lesions are identfied relative to previous.

Sagittal sequence reveals normally formed midline brain anatomy. No intrinsic T1 shortening is present. No evidence of intracranial mass, mass effect, or midline shift. Unchanged subtle T2 intensity focus present at the posterior midline posterior fossa representing a benign arachnoid cyst.

IMPRESSION:
1. Normal signal and morphology of bilateral optic nerves. The optic nerve enhancement is appreciated.

2. Stable focus of linear prolonged T2 signal within right periventricular and right hemispheric deep white matter, stable relative to previous. No new lesions are identified.
Extensive. No additional abnormality defined to correlate with history of optic neuritis.

**I don't understand quite what it says, so if someone would be willing to translate, I'd really appreciate it.

-happycowsfromwyo

Welcome, I don't understand (or take as gospel) radiologist speak so I look for myself. You said ya have mri on cd but can't use it, program should be included on disc but if not, Onis is best & only program i've found that lets you import multiple scans/discs to compare.

There's quite a few images posted here though all I know is more dots = bad & damage on one side of brain effects opposite side of body..except for eyes? Someone clear that up for me please.
http://neurotalk.psychcentral.com/sh...light=show+mri

Wondering if left side of your brain has lesions/dots since right side of bod has less feeling.

Also wondering about blood flow to & fro brain. Ask for a doppler of neck area. An MRA scan might not be a bad thing either.

Depression meds- good for you if you finally found a good one!
mrsD might've been right for more then you regarding low B's & Folic levels.

Good luck, you're young, careful with cleaning chemicals.

I don't have the recent scan on a CD. The one I have from a year and a half ago, I do. The radiologist report came as a piece of paper in the mail comparing the one I do have on a CD to the one I don't have on a CD.

I got blood tested a few days ago, they're checking for b vitamins among other things. I should hopefully know the results in a few days.

Had a panic attack a few days ago, but the meds I'm on work directly on my depression and not on my anxiety. But they have me on Clonazopam for the anxiety.

As for other scans, I'm going to wait to see what they say after the blood test. It's come to the point where my dad won't help me pay my medical bills, so I'm having to pay them myself with making around $400 every 2 weeks, sometimes 3 weeks. And having other bills on top of that.

The cleaning supplies are supplied by my company that I clean for. I know I use WD-40 to shine sinks and some special cleaner to clean everything else. I have a duster to dust everything, so no dusting chemicals. But I'll be careful.

Thank you for your reply :)

-happycowsfromwyo

Finally got the phone call

On Friday, I finally got the results of the blood test. They told me everything they tested for (including B12) was normal except I had low blood sugar. But I had only had a glass of milk before going to get blood tested, so that's probably why. They also told me they didn't find anything on my spinal MRI and that everything looked normal. They said that they're going to discuss whether they just want to see me in 3 months or to send me to a different neurologist.

At this point, I don't know what I want to do. I'm thinking about quitting trying to find out what's wrong with me. It's obvious that they don't really care. So, maybe I shouldn't as well. Maybe it is just all in my head. I'm still getting the zaps when I look left or right with my eyeballs, but it's only when I lay down or when I'm sitting in my chair, mostly at night.

Any advice on what I should do? Should I just give up?

-happycowsfromwyo

You don't have to give up, but, unless your symptoms are too horrible to live with
and you've been tested and cleared of other diseases, then just get on with your
life and stay in a "wait and see" mode. Breath, be happy.:hug:

If things get bad again, then you are probably ready for more tests.
MS is a creepy little disease that creeps up on you and bam, there it is again.:eek: