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Undiagnosed and struggling!

H

hannahclaire

Hello! My name is Hannah, nice to meet you all. I have been dealing with an unknown disease that has gotten progressively worse in the last 2 years.
Symptoms I have been dealing with(deling with a lot of crap! pun intended.)
Constipation
Diarrhea
Mucus/blood/other gross things.
Nausea
Fatigue
Joint pain/inflammation(sometimes of the eyelids)
Abnormal tummy noises
Abdominal pain, everyday!

Weird skin problems: (not sure how to upload pictures..)

I have the ana antibody and low white blood cell count.

I am on plaquenil and dicyclomine.

Anyway, just wanted to introduce myself because my G.I. mentioned it could be ibd causing all my problems.
 

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Trysha

Trysha

Moderator
Staff member
Hello Hannahclare
Welcome to the forum.
Sorry to hear you are having all these problems .
You have come to the right place for expressing yourself and seeking information, and you will soon find lots of helpful friends dropping by with their opinions.
Your symptoms are suggestive of IBD---has your doctor ordered tests like colonoscopy and bloodwork which will include CBC, Sed rate and CRP, VitB12 levels and Ferritin to name a few.
You mention plaquenil as one of your drugs---do you have lupus, or rheumatoid arthritis?
These conditions are inflammatory by nature, and your rash could be due to lupus ---I don't
know too much about rashes except they seem to take an age to get better from them.
Please keep in touch and let us know how things go for you.
Feel better soon
Hugs and best wishes
Trysha
 
H

hannahclaire

My rheumy thought I had lupus, but I tested negative for the other blood tests besides the ana antibody. So she gave me plaquenil to help with my joint pain, but it hasn't really helped any.
 
L

Lucinda

Have you been tested for Celiac? The skin stuff is what makes me wonder. Definitely sounds like IBD of some kind. Hope we can give you some ideas for questions to ask the doctor.
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

Have you been referred to a GI doc yet? If not I would get onto your GP and ask them to do this straight away as your symptoms do indicate that you need investigation in this area.

Pls keep us updated on how you get on.

AB
xx
 
H

hannahclaire

Hey thanks for the replies!
Yeah I went to a G.I. and he gave me some medicine for IBS, and told me to come back in 2 weeks and if it hadn't helped me he will do more tests. The medecine hasn't helped very much. The G.I. touched my tummy and said it didn't feel like I had an IBD.
I just want an answer! Haha.
 
David

David

Co-Founder
Location
Naples, Florida
Hi Hannah,

Ah, the gold standard test for IBD, the "Tummy touch" test. If the tummy touch test doesn't point to IBD and you have blood in your stool, then it must be IBS despite the fact that IBS doesn't cause blood in the stool so giving IBS meds is SURE to help!

As you might tell by my sarcasm above, I'm not a big fan of your GI at this point. But at least he's willing to do more tests, he has that much going for him.

Do you have any rashes on your legs or anywhere else on your body or just the ones you showed pics of? Any other weird symptoms that you wouldn't think would be related?

Again, welcome!
 
Stacey

Stacey

Sounds like IBD... need to get colonoscopy done, looks like a formn of psoriasis ??? I have psoriasis and have been told it can come alongside with crohns.. Fingers crossed you get it sorted soon.
 
H

hannahclaire

David said:
Hi Hannah,

Ah, the gold standard test for IBD, the "Tummy touch" test. If the tummy touch test doesn't point to IBD and you have blood in your stool, then it must be IBS despite the fact that IBS doesn't cause blood in the stool so giving IBS meds is SURE to help!

As you might tell by my sarcasm above, I'm not a big fan of your GI at this point. But at least he's willing to do more tests, he has that much going for him.

Do you have any rashes on your legs or anywhere else on your body or just the ones you showed pics of? Any other weird symptoms that you wouldn't think would be related?

Again, welcome!
Click to expand...
Yeah it didn't seem like a very accurate test to me!
Yes I get the same rash on my knees that is on my elbows, every doctor I have been to says its not psoriasis, but they dont know what it is. My rheumy thinks it is an autoimmune response.

I have a sore throat, sometimes it lasts for weeks. My body just doesn't act right.. haha. I once went into anaphylaxis for no apparent reason, no new foods, meds, anything. They still dont know what caused it.
Trouble concentrating. Stabbing pain in my abdomen.

I think I listed everything. (Oh. I also have "brain fog" haha.)

Thank you!
 
H

hannahclaire

Stacey said:
Sounds like IBD... need to get colonoscopy done, looks like a formn of psoriasis ??? I have psoriasis and have been told it can come alongside with crohns.. Fingers crossed you get it sorted soon.
Click to expand...
It could be! But no one has taken a biopsy yet, I have been to so many doctors and no one can tell me what it is!
Thank you!!
 
Stacey

Stacey

Well maybe should get a biopsy... i get mine on my elbows and knees and ankles... your images spec elbow looks alot like psoriasis but yet im not a doctor... good luck. :)
 
H

hannahclaire

David said:
Anything weird going on with your tongue?

Sorry for the strange questions :)
Click to expand...
Hm well the only weird thing I can think of is that lately the sides have been "ripple-y." Or curvy. I cant think of how to describe it. Its like little waves on the side of my tongue.

I also sometimes get blisters on my lips which my rhuemy says is also an autoimmune reaction.
 
David

David

Co-Founder
Location
Naples, Florida
Are any of those blisters on your lips sores on the corner of your mouth?

Anyway, my GUESS is that you have Crohn's disease and corresponding vitamin deficiencies. Have them test you for every B vitamin they're willing, but especially B12 and B9 (folate). I'll bet you're deficient in at least a couple.

I hope they get to the bottom of this soon for you. You deserve to feel well again.

*hugs*
 
kiny

kiny

Well-known member
There's a few diseases that have symptoms like crohn, intestinal TB, celiac, whipple's disease, prolly more I don't know. Only a biopsy together with a blood test can give real answers. Hope you feel better soon.
 
H

hannahclaire

So I have been taking the medicine that my G.I. gave me. It has helped a little. I go to the bathroom less frequently, but I still have pain and nausea.
 
L

Lucinda

If you do decide to go gluten free, don't do it until after you have the Celiac blood panel run. If you go gf before that, it will affect the test and may give you a false negative. Celiac and Crohn's can look very similar. I have only talked to one GI who could actually tell me how they looked different in the intestine. He was a rarity. GF can help both diseases but it is always good to know WHY you are going gf. Good luck!
 
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