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paraneoplatic - Calcium Channel N-type AB

Natops
Oct 17, 2013 • 5:14 PM
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Hello,

I’m 37 years old. For 3 years I have been sick with this over all body pain/ache. It feels like I have the flu (without the fever, coughing, sneezing). My legs and feet especially ache with pain. It’s almost disabling. I have weakness. I have tachycardia (POTS). I have small fiber neuropathy. The only red flag serum to show anything wrong is the Mayo Clinics – paraneoplastic calcium channel N-type AB. I’ve twice tested positive.

So back setting – besides these neurological problems, I’ve also suffered from GERD. My last endoscopy showed gastritis, polyps, and ulcers. I have diarrhea every day. I am positive for H pylori. My stomach does get bloated very easily.

I was just reading some medical journals where that antibody I have (N-type) is found routinely in AGMD. http://www.sciencedirect.com/science/article/pii/S1542356508003388

In fact its on the Mayo Clinics AGMD serum test.

http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/89886

So maybe this is an answer to this neurological condition that’s been plaguing me for 3 years. Anyone else here suffering from neurological impairment and gastro issues?

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Darla
Oct 18, 2013 • 3:27 AM

WARNING: I'm a natural med believer.

here's some info I found;

http://www.naturalnews.com/GoogleSearchResults.html?q=neurological+impairment+and+gastro+issues&cx=010579349100583850635%3Aw_kzwe9_yca&cof=FORID%3A11&ie=UTF-8&sa.x=47&sa.y=16&siteurl=naturalnews.com%2F&ref=&ss=0j0j1

it might be good for you to sniff around alternative care for your body. It's much friendlier.

Do you think you're taking heavy meds that might be causing the gastro upset?

darla

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Kitycat4
Oct 18, 2013 • 7:34 PM

Hi There!

I had that panel done. I also have POTS and distal small fiber neuropathy. In addition to the neurological issues I have gastroparesis, esophageal dysmotility, GERD, constipation and interstitial lung disease. Several of the specialists I have seen suspect an autoimmune disease but so far all my antibodies have been negative. So...the underlying cause in my case is still a mystery.

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Natops
Oct 18, 2013 • 9:00 PM
In reply to Kitycat4's comment

Kitcat. Do you have any neuropathy pain?

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Kitycat4
Oct 19, 2013 • 1:07 PM
In reply to Natops's comment

Natops,

I do have some pain but I wouldn't say it is severe. I do however have a lot of muscle weakness and fatigue. I had an EMG done twice which showed myopathic changes but muscle biopsy was normal. I also had the autonomic battery of tests that showed the POTS but also the QSART showed greatly reduced sweat output. Did you have any of this testing done as well? Have you found anything to manage your pain? Have your doctors proposed any type of immunosuppressive medications?

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Natops
Oct 19, 2013 • 3:46 PM

Ive had QSART and skin biopsy - both showed abnormal. I did the sweat test a Mayo - that was normal. Tilt Table showed I had POTS. If I didn't take fludrocortisone and midadrine - I would be laid up in bed with POTS. Nothing helps my pain. Im currently on high dose steroid IV - it does not help. Next, Im going to ask the doc if he will prescribe plasma exchange.

Have you had the actual Mayo paraneoplastic panel run?

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Kitycat4
Oct 19, 2013 • 4:48 PM

Hi again!!

I had the Autoimmune Gastrointestinal Dysmotility panel (89886) from mayo done which included the calcium channel antibody plus a few others. There is another separate panel- the paraneoplastic panel. That one I have not had done yet. I asked my doctor about it and he said it would be worth doing. There are quite a few additional antibodies in that one the other panel does not include. Although I saw the calcium channel antibody is in both. I just got back from Mayo...saw an autonomic specialist there. They confirmed the abnormal tilt and QSART tests that my hospital in Chicago got. The doctor at mayo also mentioned it may be worth repeating the panel I already did as I just may not have had enough antibody at the time to be detected. And he also mentioned that there are other antibodies out there for which the testing does not include.

Sorry to hear that you have not had relief to your pain. Hopefully you can give plasma exchange a try and it will be helpful!!

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