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Crohn's Disease Forum » Your Story » My story. "Medical Mystery"


 
12-01-2014, 12:42 PM   #1
Mattz101783
 
Join Date: Dec 2014
My story. "Medical Mystery"

The title of my post is what the doctors keep calling me.

Until recently we found that I have IGG and IGM deficiency. (Igg 50 or 500, and IGM 20). My story started when I was 17 yrs of age, I got Minimal Change Disease out of nowhere, healthy young and in shape.
After recovering from that I had 13 years of diarrhea, which about 2-3 years ago turned into "dumping syndrom" style diarrhea, anything I would eat would cause me to be running to the bathroom. Well, Dec 2013 it all stopped.
December of 2013, still eating healthy, doing what I can to deal with the chronic diarrhea, it stopped. I had ONE week of healthy bowel movements, until...... Anything I ate would spring back out like I had a balloon tied somewhere inside, when it filled, it would recoil and for four months I vomited instead of having bowel movements. I would have a BM maybe once or twice a month, this is when they started poking and testing.

They did two upper gi endoscopy's, a cystoscopy, and a colonoscopy. Findings were they took my gallbladder, I was diagnosed with "Chronic Gastritis" and "microscopic colitis." Eventually I ended up at a motility specialist at UPMC pittsburg, who was also very confused. This was about march of 2014, he told me to stop "trying" to find things I can eat and stick to ensure and liquids.

The "Ensure" diet worked, no more vomiting, normal bowel movements. My body was rejecting solids, this didn't make a whole lot of since, so I found doing some google research that it was probably a "Pseudo Obstruction." One of the tests Klous did came back saying I had low gamma globulins. This was after four celiac bloodwork tests returning saying I had low IgA.

Finally back at the immunologist, she found reason to check my immune system (Yes I went to her at the start of all of this and said I feel like it is my immune system.) She ran IGG subclass and checked about everything. My IgA was about 70, which is bottom of the scale normal, my IGG was 500 where 800 was normal, and my IGM was 20 where 80 is lowest normal.

Has anyone else here had Immune Disease GI problems? Would this likely be the cause of my "paresis" of my "gastro" (Funny I put it like that but my stomach empties normal, so I did not want to say "gastroparesis" which refers to the stomach.) From researching (I have an appt on the 3'rd with the immunologist to go over these test results,) but I will be put on IGG replacement, and possibly diagnosed with what used to be called CVID.

I have been wondering, because I can not seem to find any stories where the diarrhea just stopped for no reason, but has anyone had a story like this? Has anybody had IV IGG and noted a recovery of the GI tract? They have noticed some problems in my neck (c2-c3 anterolilthesis, and l2-l3 problems) but don't think the problem is in the nerves.

Thanks, and I hope everyone is doing ok, it's been almost a year living on ensure and it's rough.

Matthew
12-01-2014, 01:42 PM   #2
baistuff
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You seem to have hypogammaglomulinemia. It's not common and is usually divided into primary and secondary. Your story has elements to suggest either...


1) You many indeed have a rare version of a primary cause called CVID (Common Variable Immunodeficiency.) If often presents in the teen years and VERY commonly presents with diarrhea, protein loss, and a celiac like picture. What goes against it is that CVID patients typically have recurrent and sometimes nasty sinus/bronchiolar infections, which you do not report.


2) Secondary is often the result of another process. What stands out in your case is the Minimal Change Disease. This can, and is often assoicated with protein malnutrition, leading to hypogammaglobulinemia. It often does come out of nowhere. I'm also not sure what you mean by "got over it." It often requires a long course of steroids, and even when treated quite often relapses requiring long duration and escalation of treatment.


So in short, I think your GI issue is NOT a primary GI problem like IBD or Celiac. I think you either have CVID or a secondary immunodeficiency related to a longstanding or recurrent renal disorder which can be assoociated with protein/immunoglobulin loss and GI issues.

Since these are both rare and these are way beyond my specialty, my only advice is to get a couple of second/expert opinions.

Good luck.
12-01-2014, 02:25 PM   #3
Mattz101783
 
Join Date: Dec 2014
For the Minimal Change I spent 1year on 150mg of prednisone, then 6 month tapered. This was every other day to prevent dependence. As far as the nephrologist is concerned I am full remission and show no protein loss in blood or urine.

I have been pushing to get to the right doctor, I am seeing a motility specialist, however the Immunologist specializes in allergy in infants. How would I find the correct specialist to determine what could be the problem. Having the low IGM and IGG combined, where my IGG subclass 1 and 2 were low, 3 and 4 being normal, I question the protein spilling which would make since that along with Serum IGG being low, they would all be consistent.

I have however had chronic allergy problems, sinus infections, and sometimes ear infections. I've been told "You're always sick" by many people in my life.


In the mid ohio valley here we don't have the best doctors, I have been sick long enough that I have gone from great health insurance to medicaid, which means I can not go to mayo clinic or johns hopkins.

Thanks again for the quick reply, it is nice to hear someone say it is good to push and keep going. With the extreme fatigue all of this has given me I have wanted to give up and roll over, having my mother beside me also pushing has helped a lot too.

Last edited by Mattz101783; 12-01-2014 at 02:40 PM.
12-01-2014, 02:53 PM   #4
Mattz101783
 
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Could the CVID cause Minimal Change Disease?

Also, my gosh the brain fog is beating on me here, I had Mono for two years (And yes the active mono test not just the spot test.) Doctors concluded that I got rid of mono, was re-infected by someone I gave it two, and repeat.

Nobody in my life had mono, and nobody caught it from me.
12-01-2014, 03:01 PM   #5
baistuff
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Could the CVID cause Minimal Change Disease?
I'm not sure if they are related. I guess in theory they are both immune related, so it's possible. If you have indeed had a number of recurrent sinus/pulmonary infections then CVID is possible. I could be completely wrong about this. Immunology is not my specialty, but when I hear depleted immunoglobulins, malnutrition, recurrent infections in a teen/young adult, it certainly does make that bell go off a bit.

Being a stuck up east coaster who grew up, went to school, trained and practiced entirely up and down the coast and that thinks the entire world exists between Boston and DC, I don't know many folks in the mid west. Certainly the Cleveland Clinic is world famous. Outside of that, I'm not too familiar with what Ohio has to offer.

Good luck.
12-01-2014, 03:12 PM   #6
Mattz101783
 
Join Date: Dec 2014
I went to OSU wexner hospital for my first upper endoscopy. They were the ones who told me "I would bet you money your gallbladder is fine, we will do an ultrasound though." After pushing for a doctor in Marietta Ohio, who did a hidascan, my gallbladder was at 10 percent, and had it removed a few weeks after. I've always been the "medical mystery" since the minimal change.

Before being diagnosed with Minimal Change, I went from ER to ER, specialist to specialist, hearing I was lying and had to have overdosed on steroids or bad LSD. I had not tasted a cigarette at this point in my life, nore a drink of alcohol, it wasn't until my mother called a nephrologist at Women's and Children's in Charleston WV that I was on the road to recovery. (I had gained 30+ lbs in pitting adema in a matter of days.) (This is talking about the minimal change disease, gave me a sour feeling of doctors for years. They didn't seem to want to believe me, and didn't seem to care, I was having "organ failure.") The nephrologist did a kidney biopsy, saw minimal change and started the prenisone, and diuretics at first.

I will be calling cleveland clinic to see if they can work with me, Mayo clinic will connect with my doctors via email and give advice but it would be an out of pocket HUGE expense for me to go there. I am unsure if Cleveland Clinic is the same, it may come to an empty pocket by the end of it, but getting back to having a normal life would be worth it.


(I currently live in parkersburg, west virginia. As east coast you I am guessing. This is why I am limited to pittsburg for some reason. I would LOVE to find that cleveland clinic would accept WV medicaid but this is not likely..)

Thanks again for the words, I will hopefully know something after I go back to the immunologist on the 3'rd, so I will not forget to post it on this forum. I would like to think that all my suffering would lead someone in the future to faster medical help and more knowledge on this rare condition.

Thanks again,

Matthew

Last edited by Mattz101783; 12-01-2014 at 05:44 PM. Reason: After reading it didn't seem complete.
12-01-2014, 10:22 PM   #7
Catherine
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Welcome to the forum

Paging Malgrave and DanceMom both have children with immune issues.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
12-01-2014, 11:15 PM   #8
Mattz101783
 
Join Date: Dec 2014
Thanks, I have joined a few forums before but never seemed to get any replies. It's nice to see that people care (I know they do because I do care about others.)

Two more days until I go back to the immunologist to see about the iv igg infusions. I don't think this will fix my stomach, but I know that it is linked! This has all been so confused, for years I have been told that I have IBS, which I always questioned, I should have pushed harder! I hope others see the rare cases and see them helped, so others can also see some light at the end of the tunnel.

I know that when I had the Minimal Change, these forums did not exist, and I felt completely alone and confused.

I will have you all in my prayers, seeing so many people with problems that make mine seem small really puts everything in prospective.

Thanks again,

Matthew
12-02-2014, 08:42 AM   #9
DanceMom
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My daughter was diagnosed with CVID in July. She had IgG in the 500s as well...IgA and IgM were normal. The clincher to getting a CVID diagnosis is failing the vaccine challenge. Have you had antibody testing done for the Pneumovax or Tetanus vaccines? On the initial test my daughter showed very low, practically non-existent, antibodies. After repeating the vaccines her initial response was adequate, but she quickly lost the antibodies proving that her immune system was faulty and she had a primary immune deficiency. Now that she is on IVIG her IgG is in the 900s and her GI issues are almost completely resolved. If you have any specific questions I'd be happy to share what I've learned along the way.
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Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
12-02-2014, 10:20 AM   #10
Mattz101783
 
Join Date: Dec 2014
Thanks for replying, I will take those questions to the immunologist tomorrow! It's so nice to hear that the GI issues can be resolved.

My IGM was at 20, where 80 is the lowest normal range. From what I understand the IGM is what saves the vaccines and antibodies from previous illness such as CMV or EBV. (Probably why I had mono for two years.)

Thanks again so much! I am very exited to get better and hope that the IV IGG can help me also.

Matthew

PS: I hope your daughter is still doing well in the future!
12-02-2014, 02:24 PM   #11
Malgrave
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Very useful information about the IBD and immunedeficiency, not only for VEO cases:

http://www.gastrojournal.org/article...14)00919-6/pdf

http://www.crohnsforum.com/showthread.php?t=43355
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12-02-2014, 02:47 PM   #12
Mattz101783
 
Join Date: Dec 2014
I can't believe all of the knowledge and help I am getting, have had some PM's with a Lady who's daughter diagnosed CVID and had similar IGG results from mine, being highly improved after treatment.

Thank you all so much I will be studying both of those links tonight before my appt with the immunologist tomorrow. (She seems to think that Immune does not effect GI in my cause until the GI ran the C reactive protein test which gave back IGG levels!)
12-03-2014, 08:24 PM   #13
LodgeLady
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I have IGG deficiency, IGG subclass deficiency and at times IGA deficiency. I have had the pneumonia vaccine test for antibodies and produce none. ( three times I repeated the test and no sntibidies) For years had multiple sinus infections which lead to sinus surgery. Out of no where asthma and GI problems . My pulmonary doc advises against immunoglobulin replacement due to IGA deficiency ( it is contraindicated). I am seriously wondering if all my GI problems are related to the IGG deficiencies.
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12-04-2014, 12:35 AM   #14
Mattz101783
 
Join Date: Dec 2014
They are running the vaccine test with me. Talking about the IGG replacement, monthly and possibly weekly.

She is also running CD4 CD8 CD20 CH50 CD16 and CD56
along with "Mitogen Stimulated Lymphocyte Function." Two hospital labs had no clue how to enter these tests into the system, the Mitogen and one of the vaccine tests weren't coming up with the same terminology on the paper she gave me. They are going to call to confirm they are doing the test correctly and start the bloodwork tomorrow. So they will be testing my vaccine levels, I am then to go to my doctor and get Pneumo AB and Tetanus vaccine shots, wait four weeks exactly to the day and have the levels checked again.

She said there is nothing that can be done about the IGM deficiency. She explained that it is the first line in defence of the immune system. I've done some research, not many reports of IGM levels being low as 20. Does anybody have experience or knowledge of IGM deficiency and what this means?
12-04-2014, 08:54 AM   #15
DanceMom
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IVIG is typically done every 3-4 weeks. It can be done in a hospital or medical setting and sometimes in the home with a visiting nurse. My daughter prefers IVIG at the infusion center of our children's hospital. She only wants to be reminded of her illness once a month and our home is her "safe place".

SubQ is typically done every week. Some people like the convenience of this method and reduced side effects (IgG levels are more steady).

Glad your doctor is being thorough and following through with the vaccine challenge. Even if you do produce an adequate response after 4 weeks be sure to have your levels checked again in another 6-8 weeks. That's when we saw the decline with my daughter.
12-04-2014, 09:29 AM   #16
Mattz101783
 
Join Date: Dec 2014
I will make sure to ask about having them done 6-8 weeks after again to be sure. This doctor seems to be pretty thorough. I had a sigh of relief after hearing she wanted to run those tests after talking with you!

Thanks again,

Matthew
04-26-2015, 06:09 PM   #17
Mattz101783
 
Join Date: Dec 2014
So, It has been quite a while, I have not been back often due to the lack of news to post.

I can't seem to find anybody else who had diarrhea from teen years then an immediate flip to chronic constipation.

I have now been living on liquids for over a year, latest I started Elecare Jr. to rule out any allergies, which had no change so I am mixing elecare with Ensure & boost. (On this diet I have found I have less fatigue.) I am also eating animal crackers, on the random idea that they are made your young ones I figured they would be easier to digest.


I am not ten+ days constipated, I have taken Fleet enema's and filled the bottle 6 times or more to try and reach the part that is blocked. What I get is a bunch of water coming back out.

Along with my doctors, we can't seem to think of any cause where over ten years of diarrhea would flip flop to constipation and slow movement of the bowels. I have also been getting a high fever every 10-15 days for months (Ever since I got a thermometer I was able to check when I felt sick to see if I was sick or just experiencing fatigue.)

I'm due to visit some doctors in pittsburg at UPMC to second opinion my immune system (I passed the immunization challenge just barely but am still getting fevers like clockwork.) My bowels, well, I have no clue what is going on, I want to be done with this, my mind is tired and being in bed freezing and sweating every other week on top of being unable to eat solid foods due to vomiting.

I am not vomiting every day on the liquid diet, mainly when I have been constipated for over ten days.

Helpless, tired, and broken

Matthew
04-28-2015, 06:14 PM   #18
David
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Hi Matthew,

Through all of this did they do a CT Scan of your intestines or a pill cam?

All my best to you.
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04-29-2015, 01:20 PM   #19
Mattz101783
 
Join Date: Dec 2014
They have not done a pill cam or a CT of my intestines. We had thought this would be a great idea, the doctor I am seeing is a motility specialist and thinks a pill cam would be like a "cork in a wine bottle" and just get stuck. They did a small bowel follow through, an hour into this test they told me the barium stopped moving, which at this point I massaged it through myself (I am getting pretty talented at helping things through when they are stuck.)

I seem to be having two patterns,

1. High fever every 14-20 days

2. Constipation for 8 days then a bunch of bowel movements in one day (I usually have days of enema's that do nothing, take plenty of meds that should help me go, which none of these work either.)

Seems to be that once I can achieve one BM that a more will follow.
04-29-2015, 07:41 PM   #20
David
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That they haven't done a CT Scan is insane. I suspect you have abscesses causing the recurring fever (this can be dangerous) and severe scarring/narrowing of your intestines causing the constipation in the area of your intestines the colonoscopy and endoscopy can't reach.

You need to ditch the motility specialist and get to a Crohn's specialist and get a CT. I suspect very strongly that surgery would be in your future after all of that and it would result in a vastly increased quality of life.

I have read thousands and thousands of Crohn's stories over the years and have gotten a pretty good feel for how it can progress. PLEASE get to a Crohn's specialist and demand a CT or even an MRI.
04-30-2015, 01:16 PM   #21
Mattz101783
 
Join Date: Dec 2014
I think I am going to take your advice on this, I appreciate you taking the time to read and reply, I've been living on hypoallergenic baby formula and crackers for over a year. Still getting the fevers, sensation of tingling all over my body but no symptoms besides stomach pain.

I have a condition in my neck where c2 is sliding forward off c3, so the doctors just want to blame something else to get me out the door.

Again thanks so much,

Matthew F. Zyla
04-30-2015, 01:40 PM   #22
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That they haven't done a CT Scan is insane. I suspect you have abscesses causing the recurring fever (this can be dangerous) and severe scarring/narrowing of your intestines causing the constipation in the area of your intestines the colonoscopy and endoscopy can't reach.

You need to ditch the motility specialist and get to a Crohn's specialist and get a CT. I suspect very strongly that surgery would be in your future after all of that and it would result in a vastly increased quality of life.

I have read thousands and thousands of Crohn's stories over the years and have gotten a pretty good feel for how it can progress. PLEASE get to a Crohn's specialist and demand a CT or even an MRI.
Sorry if I missed this somewhere in the thread, but have you actually been diagnosed with Crohn's, Mattz?

I am also described as a medical mystery. I have a few different medical problems. One took years to diagnose, I had all sorts of tests and saw all sorts of specialists but nothing ever made sense. It turned out I have a pretty much unique genetic condition, though there are conditions that are similar. Medical mysteries do happen. Maybe you're one as well?

Things got a lot easier for me when I stopped trying to find medical diagnoses that I thought could fit with my symptoms and test results. Because no matter how much googling I did, I never would have come across the right diagnosis, it's just too rare. And I've been helped so much by doctors who take the same approach and just treat my symptoms, and fix complications when they arise. Doctors usually want a firm diagnosis before they'll really try and treat an illness, but that just wasn't possible for me, and I am much happier with the care I get now.
04-30-2015, 02:42 PM   #23
David
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Matt,

The tingling all over your body. Is that in your arms/hand/legs/feet or all over? If all over, did it start in those areas of your body and then spread?

Sorry if I missed this somewhere in the thread, but have you actually been diagnosed with Crohn's, Mattz?
He wasn't specifically diagnosed with Crohn's but was with chronic gastritis and microscopic colitis. So he has an IBD diagnosis and they've never checked further up than where the colonoscopy can reach. I bet money they find what I described in my post when they do.
04-30-2015, 03:15 PM   #24
Mattz101783
 
Join Date: Dec 2014
It's hard to tell where the tingling starts. It is only when I have a fever. (((I do have some numbness from anterolisthesis in my c2-c3 in my neck. Mainly my left hand, I also experience headaches, however the neurologist has tested my nerves and are confident that it has nothing to do with my bowels.)))

The tingling as far as I remember starts while I am asleep, and mainly when I have a fever. I step out of bed and feel freezing all over, but hot at the same time. The tingling is hard to explain besides the feeling that I want to crawl out of my own skin. My limbs are usually very cold to the touch, as if my body is pulling my blood to my organs however that works. Hands and feet feel like ice cubes.
04-30-2015, 03:43 PM   #25
Mattz101783
 
Join Date: Dec 2014
Oh, they have also diagnosed me with Combined Immune Deficiency, the immunologist believes it is from the diet, lack of digesting protein. I seem to be making antibodies so they don't want to put me on IV IGG, I currently am scheduled to get second opinions on all of this.

David, I'm glad you came across my thread, I have a close friend with Crohn's who had similar experiences to mine, and was not diagnosed until it was bad, as in his insides had ruptured. Recently I seem to becoming more and more bloated, two weeks ago I was 155lbs this week 176.
04-30-2015, 09:52 PM   #26
Catherine
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I also think you need further testing.

I have narrowing in the nerve space at C4-C5, which I told was responsible for the tingling in my left hand. I also get pins and needles in both feet often. My vitamin B12 was always low normal.

I took B12 and the these symptoms were much reduced.

I also glad to hear you are moving forward with a second opinion.

Last edited by Catherine; 05-01-2015 at 07:20 AM.
04-30-2015, 10:01 PM   #27
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I was wondering about his B12 as well Catherine. I think it'd be worth getting checked.
05-01-2015, 05:10 AM   #28
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Matt,

The tingling all over your body. Is that in your arms/hand/legs/feet or all over? If all over, did it start in those areas of your body and then spread?


He wasn't specifically diagnosed with Crohn's but was with chronic gastritis and microscopic colitis. So he has an IBD diagnosis and they've never checked further up than where the colonoscopy can reach. I bet money they find what I described in my post when they do.
Ok, thanks for the explanation.

Did they think it significant that the barium had trouble getting through your system during your small bowel follow through, Mattz?
05-01-2015, 08:52 AM   #29
Mattz101783
 
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During small bowel follow through at hour 1 they told me to do something to get it moving, it had stopped. I then asked if they have found the point of the blockage, which they of course said most likely.

Now, the test took 3.5 hrs, I was able to walk and massage the barium through my system. I am 6'2'' and 155 so I could literally feel where it was, and tell when I was able to push it along. I wish this was true for all food!

When my doctor had the results, they said it was unremarkable or something, noted that I had some pressure or pain. Honestly I vomited, after the test it took me 10 days to pass the barium and get to my full liquid diet again.

(I seem to have a pattern just like my fever. I get a temperature over 100 every 10-15 days, this doesn't seem to be linked with my bowel problems. However, I seem to be constipated for 5-8 days, when finally making one bowel movement I follow by having 8-10 more the same day and next.)

This odd pattern with my bowels has been going on longer then my fevers, and it doesn't make much since to me. After eight days of constipation this current cycle, yesterday I had 6 bowel movements of "thin as a pencil" and about 10 inches long bowel movements. The best description I have to give to the doctors is it is as if my bowel was a play dough extruder pushing out a ribben. I would say the most confusing to me is that I will go eight days with no bowel movement, when finally achieving one it is pencil thin and very black and tarry, as if I would have to wipe fifteen times or so.

(I do not wipe 15 times, I have baby wipes, I remove the majority with tissue, then use a baby wipe, followed by drying with tissue.)

Sorry this is so long, I felt like hunting down the xray tech's that did my small bowel follow through and ask them why they did not note what they told me during the test! I assume it is because it "looked" normal when it had stopped, and I was able to get it going on my own. They seem to think that part of my intestines is either paralyzed or I would think enough scar tissue is interfering with normal pattern.

Today I am off from parkersburg to pittsburg to see an immunologist. They are doing a second opinion on the whole CVID idea. I feel like I agree that there are abscesses making me fever over and over, yes my immune system is weak, most likely due to my diet, lack of protein.

Why I say this, that I agree with the IBD condition of some sort I conclude from the fact that I had fifteen years of 4x a day diarrhea, in one weeks time it all STOPPED. This blew my mind, the doctors felt I had to have mitochondrial disease or lymphoma. They have tested all of this!

When I get the fever, my symptoms are mainly dizziness, fatigue, feeling horrible all over my body. No sore throat, nothing specific to point out. Also, during these fevers my GP has tested my blood and urine for bacteria. Nothing was found. There was always a rise in patterns for blood results of having a viral or bacterial infection. White blood cells, lymphocytes, etc..... No reason for the fevers.

My GP concluded that I have an "auto-immune pattern" causing the fevers. Not once did the idea of anything linked with my gut could be causing this. And to be honest, the return of the biopsy from my colonoscopy showing "microscopic colitis" was not even pointed out to me, mentioned, or addressed. I found this on my own going through my lab work.


At this I will say, to you all, please do "google" your conditions. Don't simply read through random diseases and diagnose yourself, but what we call in psychology "Peer reviewed research" is VERY important.

Reason 1: When they found the chronic gastritis they wanted to up me to 60mg a day of Prilosec. In the end, I went behind their back, seeking a surgeon who did a hidascan and had my gallbladder removed weeks later. This immediately put an end to the "Attacks" I was having at random times. I would wake up screaming and tearing in pain, it would last for hours, I thought I was dying!

Reason 2: When the motility specialist did a C-Reactive protein test it showed that my IgG was 50 (lowest acceptable normal is 80 for this test.) I took that test and walked into the first immunologist, who tested my IgG, IgM, and IgA.

IgG was 40 at this point.
IgA was 65 (minimum normal being 70.)
IgM was 20 (This result is very odd and strange. Not common at all, and
from what I was told is that it is the first defense for the immune
system, and there was no treatment for this.)

Now after reading what david said, and again I thank him so very much for reading my post, I agree that when I would get so bloated I would vomit everything I would try to eat. Let's say day 4 of constipation I would start vomiting until day 8 I would have six bowel movements.

ALSO, after being constipated for 8 to 20 days, the bowel movements were nice and soft, very dark and sticky though. The type that you wipe over and over until finally you jump in the shower!

I also think the blame for my neck conditions will be from the vomiting.

Last of all, the schmorl's node and desiccation of my L2 - L3 disc is another "medical mystery." The IBD issues are nearly always linked to the immune system malfunctioning if I understand correctly. When the immune system gets out of hand it can do some damage!

I have had a few doctors tell me to stop going to google and teaching myself. This makes me giggle because most of my knowledge comes from my guitarist who is an orthopedic surgeon, he worries that after my minimal change disease (which is seen as nephrotic syndrome but is actually the blood vessels being attacked by the immune system. Your kidneys are a big bunch of the smallest type of blood vessels called glomeruli. He keeps hinting me to ask for a vascular study of the gut, vasculitis is not always, but can be linked to Minimal Change.)

At the point when I came to this forum, and started reaching out for help, I was having the gallbladder attacks and losing weight quickly. I felt like I was going to die (nojoke.) I have experience with peer reviewed research so I can sift through the random junk finding accurate information.

http://www.ncbi.nlm.nih.gov/ ======this site you will find testing and research for your pain and symptoms. I KNOW if you research "Recurrent fevers and this and that, this site is ok.

Also w.oxfordjournals.org/en/ has given me some great information.

This forum also is at my top for legitimate information. Doctors aren't god, they are far from perfect, and in my case, living in the mid ohio valley, not a single doctor or specialist had worked with someone who had experienced Minimal Change Disease. (Besides my nephrologist, the ER doctors are clueless.) When my kidneys started failing I gained 40 lbs in swelling in three days time, went from ER to ER to ER and specialist to specialist, found myself at womens and childrens hospital in Charleston West Virginia where my own mother went through her medical dictionaries from nursing school, called the doctor who did a kidney biopsy and had me home that week. The other doctors were attacking me with "you need to stop bs'ing with us and be honest, if you tried bad meth or LSD, overdosed on steroids, whatever we can help you. You need to stop lying!) This is where my lack of trust in the medical field started, and I learned my lesson.

Forums like this, and people like david have seen thousands of cases, stories, and results! People returning to explain how they were diagnosed and basically healed!

My case of being a "medical mystery" isn't so common I guess, but after seeing the GI doctor here who took my gallbladder I had not one doctor talking with me. My GP was clueless. I was basically starving to death, I had to get myself motivated, stop crying, and find the right doctor.

After all of this, I will agree don't read into things that don't apply to you, you WILL diagnose yourself with POTS or whatever. When you are in pain and don't know who to turn to, type your symptoms exactly, find some stories of people surviving (this will make you feel so much better,) and I have had a few personal messages from this site that have led me to control my suffering bigtime.

At that, sorry for writing a book, I've learned many lessons through this horrible experience, and if we don't find anything today traveling 4 hours to the immunologist I am confident that I will survive. Many people have been through similar to worst conditions, taken years of testing, and survive, this is important! Your mind can nearly heal you, or keep you from progressing. Don't fear, we are all praying for you, I know you are praying for me,

So much love,

So many prayers,

And when I get this figured I will return to share what I have learned and will continue to pray for the rest of you who are suffering.

Matthew F. Z.
05-01-2015, 10:03 PM   #30
Mattz101783
 
Join Date: Dec 2014
Good news, at least towards getting somewhere!

Second opinion does not think I have CVID. He is leaning towards the 150mg of prednisone I was taking for 1yr six month taper has just beat up my immune system.

He did order a CT of my chest and abdomen.

He also asked if I had a dog. I am guessing with low immune system I could maybe have caught some sort of infectious disease I guess. He is also sending me to an Infectious Disease Specialist.

In two weeks I will be at the Rheumatologist.

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On the other hand, having some neuro problems today. My eyes were doing the "fluttering" I call it where they go back and forth horizontally extremely fast. My world looks similar to the butterfly effect movie. The pain specialist thinks waiting 5 months to get into the neurologist is no bueno, he is putting me on priority list.

Basically to describe the neuro problems I was having today, I was actually feeling good and healthy, then bam, the eye fluttering and loss of balance. I seriously thought I was going to pass out. I realize the joint problem in my neck has nothing to do with my GI, it does help to type it, I do not expect a reply to it, I almost removed it before submitting but maybe someone else is having neck problems who could relate to me.
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