Don't need an MRI?

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Don't need an MRI?

Postby IceSkate » Tue Feb 14, 2012 5:42 am

My neuro tested for porphyria, a rare disease, and seemed convinced I had it and fortunately the tests came back negative.

However, he really didn't think I needed additional testing since I have absolutely no symptoms at the moment. For two and a half months, my entire body was numb (I could still feel things, but with dramatically decreased sensation), and I had ageusia (the complete inability to taste). Before that, I had symptoms of POTS (lightheadness, heart rate that goes up 60 beats per minute when standing), stomach pains, and blurred vision.

My doctor said I wanted an MRI, I could have one. I decided to since I have no idea was what was going on and I'm afraid it will come back. I'm on this board because the only thing I can find relating to ageusia is MS. I don't know why my doctor didn't think I needed more tests.

Did I make the right move or am I just worrying to much?
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Re: Don't need an MRI?

Postby MarkLavelle » Tue Feb 14, 2012 3:52 pm

IceSkate wrote:... he really didn't think I needed additional testing since I have absolutely no symptoms at the moment.
If he's saying there's nothing to be done unless you have symptoms, I would start looking for a new neuro! But I'll assume that's not what he meant...

It may be that there's nothing else to test re: porphyria, but MRIs of brain & spine will give him a lot more data to work with. Did you (or will you) have any blood tests?

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: Don't need an MRI?

Postby IceSkate » Wed Feb 15, 2012 5:42 am


My neuro's nurse called about tests for porphyria, and said they were negative and that the doctor thought I really had porphyria. She made it sound like he didn't want to do further tests because I had no symptoms and that I should call if in the future I did, but she did say MRI or LP were something they could do if I wanted... I was confused because it sounded like she was just going to let me go without tests.

I had vitamin B12, B1, B6, copper, heavy metals, ceruoplasim... all levels are fine.
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Re: Don't need an MRI?

Postby icecube2 » Wed Feb 15, 2012 7:08 am


I went desensitized down my left side from the top of my head to the tip of my big toe, about 20 years ago, I was quite stressed out. I was diagnosed with depression which was understandable. Anyway the feeling or non feeling, went after a few weeks, just leaving a slight residual feeling in my left hand, but not a problem, and I continued with my life as normal for the next 7 years even had my third child. I would go and get your neck checked out by a Chiropractor I'd avoid letting stress get to you, but otherwise just carry on as normal.

Dont be too eager to get a diagnosis, personally I think you are doing the right thing, just check that neck out yeah!
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Re: Don't need an MRI?

Postby jimmylegs » Tue Feb 21, 2012 5:31 am

hi iceskate, which heavy metals were tested iima? also did they give you the results with units, or just tell you everything was 'normal'?

pls be aware that 'normal' is a statistics normal ie data on enough different people that it describes a bell curve. ie lowest to highest values from a group that is large enough to represent everyone.. including sick ppl. somewhere within 'normal' is a smaller range representing healthy people.

fyi the inability to taste could be a red flag re zinc status. did they test zinc by chance?

this is only case study, and an odd one at that, however:

Hypozincemia, Ageusia, Dysosmia, and Toilet Tissue Pica
'A 37-year-old female presented with complaints of ageusia... She was found to have hypozincemia and iron deficiency anemia. Her complaints quickly abated when treated with oral zinc and iron.'
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
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