Hello :) About to accept that I may be crazy - crowd sourcing for one last push to continue!

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Regular Member

Date Joined Sep 2014
Total Posts : 247
   Posted 4/9/2015 7:45 PM (GMT -6)   
Hi :) I'm a 31 year old mother of three. A former student (3rd year) in the faculty of social work.

I have been through the ringer the last 8ish months. I had an appendicitis type attack (2nd in 2 years) which led me to go through lengthy testing for Crohn's. I don't have Crohn's. Every test is perfect.

I've always assumed I had IBS due to abdominal pain/diarrhea for at least a decade. As my doctor started piecing together that combined with my numerous other complaints, she realized there may be more going on. I'm going to (out of total frustration) pour my life story out - please bear with me.

As a child:

●Horrendous right ear pain (gland behind right ear has been swollen since a child). No ENT could ever figure out the cause. Happens from time to time still.
●Migraines from 10ish to 22 years of age.
●Horrible growing pains in legs - probably normal.
●Joint pain in left knee starting at 14 - off and on.

The last 11 years or so:
●Inflammation shown in blood work (that's all I know, I do not know what tests showed it specifically).
●Dry eye syndrome
●Back pain - nerve type that lasted a good 6 months; could hardly walk at times - aside from an X ray which showed nothing, my doctor didn't care to look further.
●Left jaw pain - diagnosed as Trigeminal Neuralgia - due to this I am under the care of a neuro who suspects MS. I have yearly MRI's - to date NO lesions have been seen to suggest MS. It's a hamster wheel type situation at his office........
●the summer after the TN - heat/sun sensitivity - creates numbness, tingles, light headedness - I can't do heat or sun.
●Wrist pain, finger pain, palm pain in addition to the knee pain. Foot pain, ankle pain.
●Nose sores (inside) staring at 22 (during first pregnancy).
These little sores are almost constant now.
● IBS type symptoms with pain.
●Blood vessel galore on my lower gums. Broken capillaries on my lower lip.

Of course I have a terrible memory. It's getting pretty bad lately. My grades fell dangerously low so I opted to discontinue until I figure out why I can't remember sh*@ any more.

I have numerous more aches and pains which are all mild.

I apologize for the novel. I just want to know if I sound familiar to any one here so I can properly advocate for myself.

Thank you :)

Regular Member

Date Joined Sep 2014
Total Posts : 247
   Posted 4/9/2015 7:59 PM (GMT -6)   
One more thing: I have this sausage type lump in my lower right quadrant. Seeing as my scope and CT were normal - it is a stumper for sure. It is what causes the most pain in my abdomen. I'm starting to wonder if it's nothing more then my intestine.......but I'm no doctor.......

Regular Member

Date Joined Sep 2014
Total Posts : 247
   Posted 4/9/2015 8:12 PM (GMT -6)   
Annnnnd, about 6 years ago I had one heck of a cough that lasted about 4 months. My doctor wasn't too impressed and wouldn't order any tests. I hacked all day the whole time.

Also, when I was 22 I had a terrible case of chronic hives. It lasted about 4-6 months, I can't remember exactly. I did have allergy testing which came up empty handed. Diagnosis was an allergy to my own histamine or something like that. I had daily attacks of hives while this was happening.

I swear, I'm finished now ;)

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 4/9/2015 9:48 PM (GMT -6)   
It does sound like autoimmune issues, but I'm no doctor (I just play one on tv).😆

If you're rheumatologist won't pursue your complaints find another who will. Lupus is tricky to diagnose so sometimes you have to keep searching. A good rheumatologist uses the 11 indicators list for lupus. You need to meet four of the eleven to be diagnosed.
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Regular Member

Date Joined Sep 2014
Total Posts : 247
   Posted 4/9/2015 10:28 PM (GMT -6)   
Thank you for responding :)

I have not seen a Rheumatologist. I mostly tolerated aches and pains and only went to a gp for big problems that affected me. It wasn't until I presented with the appendicitis type pain that my doctor sent me to a general surgeon regarding possible IBD. It was actually my dentist who sent me to a physio therapist regarding the face pain. Then the pt alerted my gp to neuro problems (positive babinski, etc) which led me to the neuro for TN.

I haven't seen a Rheumatologist or an actual GI.......so everything has not actually been looked at all together. Which I think is my main problem. It all needs to be looked at together. Not stumping doctors separately.
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