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Crohn's Disease Forum » Extra Intestinal Manifestations » Undiagnosed with bizarre burning sensations


07-21-2017, 08:32 AM   #1
mtseeg
 
Join Date: Jun 2017
Location: Ohio
Undiagnosed with bizarre burning sensations

I haven't been diagnosed yet with a GI appointment in three weeks. I have tested positive for the ASCA blood test (both IgG and IgA were elevated). Elevated ASCA is suggestive of Crohn's.

In recent months, the most bizarre symptoms have been occurring especially in the morning. My feet and fingers will burn, calves will start twitching, and virtually all mucous membranes burn: eyes, mouth, nasal passages, even the ear canals at times --with a sometimes gnawing, burning in the stomach (but not always) and even in the anus and, well, the pee-pee.

What the???

It seems to gradually wear off or I don't notice it as much as the day goes on, but then often the cycle repeats in the morning.

Is this common in Crohn's, or is it more likely I've got some sort of other autoimmune issue that mimics Crohn's? My family has no one who's ever suffered from it, but there have been plenty of people with autoimmune disorders such as psoriasis, lupus and celiac.

Last edited by mtseeg; 07-21-2017 at 09:05 AM.
07-27-2017, 06:11 AM   #2
dxw
 
Join Date: Jun 2011
Can't say I've ever had symptoms like that (I've got Crohn's) but it certainly sounds unpleasant. Hope you find out the cause very soon and that there is a quick, painless cure.
07-27-2017, 09:11 AM   #3
Jabee
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Have your vitamin levels been checked? Vitamin B deficiency is fairly common in crohn's and can cause neurological deficits. I assume you are having GI problems too?
07-27-2017, 09:24 AM   #4
Trysha
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There are a few things that could cause this...diabetes is one could be temporary due to your health status,shortage of vitamin B as already suggested.....lots of guesswork that will be straightened out by the GI.
I know three weeks is a long time when suffering but it will soon be here and you will get properly diagnosed and treated.
Feel better soon
07-27-2017, 02:26 PM   #5
mtseeg
 
Join Date: Jun 2017
Location: Ohio
Hi: Thank you for the replies. I've been checked for vitamin deficiencies and diabetes, which are normal.

I take vitamin D pills prescribed to me two years ago by a neurologist after I started experiencing muscle twitching. My vitamin D was low, but since the prescription, that has normalized.

My ASCA test is the most disturbing. A positive ASCA test apparently has a 60-90% specificity for Crohn's, depending on what study you read. But I also understand that Celiac sufferers can also test positive, as well as those with other autoimmune issues.

I don't have diarrhea; maybe some stools are gassier than others, but otherwise solid (sorry for the graphic description). I do have some mild abdominal pain from time to time, but nothing like the really awful pain I hear from Crohn's sufferers I know (who often compare it to child birth).

An abdominal MRI taken last month found small cysts in both my liver and the right kidney, which weren't there eight years ago on an older CT scan. Maybe that's a clue.

Hopefully my new GI will be able to sort all this out. Thanks again!
07-27-2017, 03:53 PM   #6
Jabee
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I actually have both celiac disease and Crohn's disease but test negative for ASCA. An endoscopy with biopsy is usually the way celiac is diagnosed. Crohn's is more difficult. Before my celiac diagnosis I experienced severe abdominal pain. The Crohn's was found because I was extremely anemic. No two patients are the same, unfortunately. I hope you get some answers and start feeling better soon.
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