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30 YR old Matthew
May 16, 2014
My question, is this MS or a connective tissue disorder.

First off, I had Minimal Change Nephrotic Syndrome. This happened at age 17, I had spent the day at an amusement park riding roller coasters and standing in the HEAT. Towards the end of the day my feet and knees hurt.

After complaining to my mother that night I was told to go to sleep. Being woken up by her in the morning by her poking my feet, I was huge, mind blown, I had gained 30+ lbs! After this I spent months in hospitals with no diagnosis, until finally my mother requested a 24hr urin which showed 13000 of albumin. After a kidney biopsy the diagnosis of MCD came showing Glomerulonephritis.
Treatment was of prednisone & lasics. 150mg every other day of prednisone for 12months with a 12 month taper

Since I have connected the dots, coming to a conclusion that I have seen through multiple sites also, Glomerulonephritis is also called Lupus Nephritis in adults, but given the name MCD in children. Both have the same causes and treatments which are the standard for most all autoimmune problems. They had no cause for "why."

Since then, 13 years straight, I had diarrhea 10+ times a day, this has controlled my life. Along with problems in BOTH knees, BOTH shoulders, back, neck, and both wrists.
Also had urinary dysfunction, night leaking, and well all sorts of leaking. This was horrible being the age I was.

Left hand went numb while working in semi-cold weather and has been numb for 1.5yrs.

Two years ago, pain started in gallbladder area. This came with the urgent need to have a bowel movement a few bites into every meal.

My right hand went numb for a few months, but is back to near normal just a little achy. I have lost feeling in part of my scrotum. Part of my mouth went numb, now is just heavy or droopy feeling on my lips left side, slight feeling of drooling.

During the prednisone treatment I am now told that my personality "Changed." Which they thought was a side effect, however this never went back to normal. It actually progressed, brain fog, tiredness, confusion, and memory problems (LOTS OF THEM.)

The odd part about all of this is that I am very very healthy, blood test show perfect levels of near everything. However one noted thing was that two years ago, with the "gallbladder area" pain I was diagnosed with EBV mono, then had three more positive ACTIVE ebv results from blood tests. This was over a 2 year period, just had my first test showing that I did NOT have mono!

Over this 2 year period I keep talking about, I tried probiotics, gluten free, was tested for celiac, and had five hida scans of my gallbladder.


Up to this point, I had occasional vomiting, a few times a month I was woke up by random nausea and vomiting fits.
DECEMBER 2013, vomiting started soon after meals, and EVERY meal. It felt like my digestion stopped. ALSO, no more diarrhea, I had normal bowel movements a few times, nice and soft, and then it all stopped. I was having bowel movements every 15 to 20 days, and this is while taking doc q lace, magnesium, and mirilax laxitives. Added a stimulant laxitive but saw no results also.

Finally January 2014, the ER told me to go on a liquid diet, the vomiting was dehydrating me. So gatorade and pedialight was my new diet, this was so horrible! Time to see more doctors!
Two EGD an ultrasound, boatload of blood tests, mri's, x rays, my gallbladder showed 10percent ejection. The GI did not think this was linked to my gastric emptying problem, but was taken out. At this point, I am dropping everything, clumsy, forget what I'm doing, or forget what I'm saying mid sentence. I've found a diet that works, juice, a few thousand calories of juice! I can have most all liquids, except blended fruits, has to be juiced. If I try to add a banana or some spinach to a smoothy, by the time the day is over I feel DRUNK, CONFUSED, and like I am CROSS EYED. Blood levels are still perfect! Except I have this odd rash & lesions on my face that antibiotic and antifungal cream could not heal. They have been bugging me for over a month now.
Also, my tongue had white on it, which turned to "geographic," to looking like I was dehydrated with little razor blade cuts.
Lips are still heavy on one side with feeling of drooling.

I've had the celiac biopsy with the EGD's, which were negative, the Antibodies test showed negative, but low overall iga. One was 40 overall other was 50, doctors did not think anything of this.

I am still having urinary dysfunction, I don't feel FULL in my colon until I get the sensation that my stomach is going to explode. Sort of pain behind my belly button which radiates down to my crotch area.

I've also been having "attacks." These are not panic attacks, for I have some PTSD from losing my dad to suicide. I'm very active with going to my psych and therapist, and have came a long way over the years. Most help I have seen was from EMDR. The attacks started when I was awoken at 3am with the most extreme pain in my stomach I've ever experienced. This lasted for 4 hours each time, was like squeezing or pulsing, sort of like contractions in my muscles. Have also had a few attacks where my chest gets tight and I can not swollow.

(I apologize for this being so long, I'm trying not to miss anything.)

Last of all, I have started having random twitches when I lay down. Have been having some neck pain.

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