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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?

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?

Hi,

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.

Iceskate,

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!

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
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2552626/
'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.'