So, for a couple months I've been scouring the web for any information that may help me as I'm going through the crazy process of diagnosis and I keep coming to this board. So, I figured I mind as well do a post and see if anyone here has any advice for me. So, here's my story:
Since I was in my 20's (possibly even younger) I developed odd symptoms - but they were individual and I could usually explain them off - weight gain, headaches, pain, bowel issues, etc. I never thought to go to a doc and say "here's the list of everything I'm experiencing over the last year" - because I just figured they would consider me a hypochondriac. So, I took a little sick time as needed and called it a day.
Well, I guess I just had what I would consider my biggest "flare" in September, 2012. For several months I'd been quite fatigued (which was really out of character for me - I'm a 9am-10pm kind of person - go, go, go). Suddenly I was needing naps, feeling winded after a single flight of stairs, and just not feeling well. Also, over the summer, I had a bad episode of lower leg swelling, which was quite painful and difficult to walk with, for about 1 month. I also started to develop a new kind of pain - my achilles/calf region (mostly on one side, but sometimes on both) was incredibly severe. I'd had a test for DVT which was negative and told to lay down with my legs up. However, since April, I have had achilles pain almost continuously.
On September 25th, I started to get one of my famous bad headaches and some generalized pain (back, shoulders, neck, legs, etc.). The next day I woke up with an even worse headache and feeling like I had the flu. I kept breaking out in sweats (especially at night - but during the day as well). I didn't own a thermometer, so I just figured that a day of rest would help. I had a large night sweat that night and figured I'd broken whatever fever I had so I went to work the following day - Sept. 27th.
That day I woke with some pretty bad mid-back pain. Different from any other time in my life. My headache had lessened. The sweating though continued on and off all day. It was 50 degrees outside and I was sweating.
On my way home from work (I ride a cute little motor scooter), I decided to stop and buy some dinner to take home. While waiting for the food, the back pain became an absolute 10 on the pain scale, my headache was back, and I was sweating like crazy. I sat on my scooter, put on my helmet, started it up and within a foot or so experienced a syncope episode. A witness saw me go down sideways with my scooter falling as well. I woke about a minute later (thank got for my helmet). I was rushed to the emergency room. Once docs saw me (a three hour wait to be seen), they did all the regular tests. That's when I learned the following:
I had NO temperature, even though I was breaking into the sweating episodes. My crp and sed rate were elevated (as was my wbc). They were concerned I may have an abscess on my spine, due to the back pain, and rushed me off to MRI and CT. No abscess, but I was admitted to the hospital and ended up staying there for 10 days! (Who stays in the hospital that long these days??) On my third day in the hospital, when the RN's were doing a routine blood pressure and oxygen check, they discovered my oxygen level were intermittently falling into the mid-80's. So, on my case were internal medicine, cardio, pulmonary, neuro, and infectious medicine. So many tests were run over the 10 days. Nothing definite was discovered. I was sent home with major restrictions from work and no driving since I had a syncope episode and that was it.
Two days later I saw my primary doc who sent me to a rhumatologist. The rhumatologist sent me to Cleveland Clinic (4 hours from where I live). I spent 8 days seeing docs at Cleveland Clinic. I've been home a week and am going back there tomorrow for more tests, and hopefully answers.
Since this all started my life has practically been on hold. I have days where I feel like I've been hit by a truck, days that feel like I'm hungover (although I don't drink), and days where I can't keep my eyes open. I've literally lost almost 2 months of my life. Also, my docs haven't put me on any meds as they are trying to not treat symptoms without figuring out the diagnosis. Leave it to me to be a mystery patient in search of doctor house. Wow this is long, but it was good to at least write all that out.
So, here are my blood tests. I am obviously seronegative with whatever I have, but my Cleveland Clinic rhumatologist thinks I have several diagnoses, which is essentially why this whole thing has been so difficult to figure out. Ideas?
Tests that come back abnormal:
WBC: has ranged from normal to 17.5. Currently sits around 13.5. (Under 12 is normal).
Hemoglobin: Has ranged from normal (12-15) to low (11.0). Currently normal.
Hematocrit: Has ranged from normal (36-45) to low (32.4). Currently is normal.
Abs Neut (ANC): has ranged between 8.96-10.01 (normal is 1.45-7.5)
Abs Mono: slightly high at 0.88 (normal is 0-0.86).
High Sensitivity CRP: very High - 8.09 (normal is below 0.10)
C-Reactive Protein: always high between 3.4-8.9 (normal is below 1.0).
Sed Rate: tested once normal, 6 other tests all high from 24-75 (normal is below 20).
Glucose: slightly elevated, but not to level of pre-diabetes or diabetes (although I am heavy).
CO2: tested low most recently but normal before.
Anion Gap: Tested high recently, but normal before.
Lupus Anticoagulant: Positive (test done 2x)
Factor VIII:C Assay: High (189%) - normal is between 50-173%
DRVVT Screen: High (51) - normal is 35.7-48.6 - DRVVT Confirm is also high
Hex Phase Screen: High; Hex Phase Delta: Very high (18.8) normal under 5.6.
Vitamin D: 13.5 (very low). Normal is 31-80.
C4 Complement Component: High between 57-69 (normal is under 46).
IBD- Saccharomyces Cerevisiae (IgG) - very high - 70.5 with under 20 being normal.
O2 Saturation Arterial: First time was very low 87.4. Most recently back up to 93.8. Normal is over 95%.
PO2 Arterial: Also low - first time was 60, second time was 84.10 - normal is 85-95.
Tests that have come out always normal/negative (some tests have been done many times over the past several months):
RBC, MCV, MCH, MCHC, Platelet Count, Abs Lymph, Abs Eosin, BUN, Creatine, Calcium, Sodium, Potassium, Chloride, ACLA-IgG, HLA B27, C3 complement component, complement total, C2 Complement Ag, Rhumatoid Factor, ANA, Angiotensis Conv. Enzyme, ENA, IBD Saccaromyces Cerevisiae (igA), Neutrophil Specific Abs, Estimated Average Glucose, AST, ALT, Protein Total, Albumin, Alkaline Phosphatase, Amylase, Billrubin, Lipase, Troponin-I, CPK, TSH, GFR, Magnesium, T4, TSH Ultrasensitive, T3, Bicarbondale, Total CO2, PCO2, West Nile Virus, urine samples, HEP tests, IGA
So, I know this is long. I'm open to any advise. Obviously the docs are taking this seriously. Some things they are considering:
A Seronegative Athropathis which could include: enthesopathy, Ankylosing Spondylitis, and Sacroiliitis.
I'm worried that no one is totally in charge of my case and I'm seeing multiple docs with no central coordinator. Even at Cleveland Clinic I have a Rhumatologist, Pulmonologist (lung disease ruled out), Nephrologist (kidney disease ruled out), Neurologist (diagnosed migraines and an essential tremor), and Gastroenterologist (looking for the possibility of Chrones/Celiac Diseases).
I welcome comments and thoughts. I hope to come home from Cleveland Clinic this next week with real answers, a way to get back to my life, and hope!
Thanks to anyone who was willing to read this crazy long posting!!
Hi. I'm only a (dumb) patient, so please read in that light. Re: your positive lupus anticoagulant finding, have you heard of APS = antiphospholipid syndrome? You can find a "sticky post" (permanent info post) for it on the lupus board that discusses tests, symptoms, etc. (The test name "lupus anticoagulant" is actually a misnomer: it looks like it's a lupus test but really speaks to APS.)
Re: ANA, is is possible to have SLE with a negative ANA, but anti-Ro is positive. Rare (only 3 to 5% of all diagnosed lupus). Called "Ro-lupus".
I'm running late so must run, but I'll reread your post & post more if anything else pops out, to my *patient-only* eyes, that is. Bye for now, Vee
Hi, again. Many of your abnormal values seem to cluster around a few subjects, but please read this with a HUGE grain of salt, since I'm only a patient.
CRP apparently elevates in infection, lupus, giant cell arteritis, rheumatoid arthritis, and the IBD's (like Crohn's and UC).
Multiple tests seem to be about blood clotting & reasons why it *may* be clotting too quickly, which puts one at risk for DVT's, stroke, migraine-like headaches, etc. Unwanted autoantibodies can eat up critical components of the clotting process. Earlier I mentioned lupus anticoagulant & its relation to APS (antiphospholipid syndrome). The two DRVVT tests, the aPTT, and the Hex Phase screen all relate to blood clotting, too.
C4 can elevate in cancer and UC (maybe more, don't know, sorry).
IBD Saccharommyces Cerevisiae seems to be a specific marker for Crohn's.
You probably look like a pin cushion by now from all those blood draws? If you have to undergo invasive tests for inflammatory bowel diseases, today they knock you out. I had multiples back in the days they didn't knock you out totally, and though I didn't "like" them---what's to like?!---I managed fine. I sure hope you get answers next week. Hang tough, we're rooting for you & looking forward to your updates. Good luck! Bye, Vee
The Following User Says Thank You to VeeJ For This Useful Post: TheUndiagnosed (11-25-2012)
I will leave Cleveland with a diagnosis and treatment plan. There are a few test results we are still waiting on, but the docs are pretty certain about this for now.
The following may be way too much detail, but since you all have been on this journey, it just makes sense to tell you everything.
I officially have seronegative spondylarthropy which is causing an arthritic type reaction to Crohns. While he believes I have crohns, he also believes I've been lucky cause it is incomplete and I do not suffer with all the symptoms of crohns. That could change in time, but hopefully not. Another part of this is enthesitis which causes pain and inflamation where ligaments and tendants connect to the bone.
Essentially, what this all means is that I have an autoimmune disease which affects my joints, ligaments, tendents, and bowels. It is also likely the cause of my sweating episodes and extreme fatigue.
Additionally, somehow I picked up a c- diff infection, likely during my hospital stay at sparrow.
So, my new treatment plan includes: -Prednisone - a steroid - for a short time til the sulfa drug takes effect. -Sulfasalazine - used for this kind of autoimmune issues. But could take several months to be effective. -Antibiotic for a short time to combat the infection.
Also I am now on: -Gabapentine for my tremor and neuro issues -Sumatriptan for when I get migraines -Levbid for digestive issues
Any advise or thoughts on what I should expect, ask, etc???
I understood you to say that they found early (incomplete) symptoms and labs for Crohn's. Are you supposed to have regular gastro checkups with someone?
Is spondylarthropy a general term for arthritis-like symptoms that occur in multiple conditions in addition to Crohn's? If YES, what are those other conditions (so you could educate yourself on them & watch for symptoms)?
What is "c-diff infection"? How will you know when it's gone (or hasn't gone)?
Re: labs involving blood clotting, what did your multiple elevated values mean? Do the findings of Crohn's, seronegative spondylarthropy, and "c-diff infection" fully explain those labs? Were any other conditions considered, like antiphospholipid syndrome (APS) or others? (I ask about APS because it's an autoimmune condition & Crohn's is, too.) Any followup needed?
I hope others post more suggestions. Drop updates when you can. With my best, Vee
I have Crohns. I also Have Vagusvagal syncope. A flat adenoma was discovered during colonoscopy. Whenever it was bleeding I was on the floor. Surgery,a resection, to remove that part of the large intestine that had the polyp was all I needed to get better. Microbleeding in Crohns had also produce some of the symptoms you have. Occult blood tests of your stool would be appropriate not to mention GI series xrays with barium. As far as Syncope nausea is a tell tale sign with very low blood pressure readings i.e 90/50. You really need to rule things out and the above might be a good start. LOL and I hope you feel better!!!
I hate it when you never find out what happened to someone... so here's my update.
I spent a total of 10 days at Cleveland Clinic seeing multiple doctors and having a LOT of tests. My primary doctor there was in their Rhumatology department. I have to say, my experience at Cleveland Clinic was AMAZING and the doctors really spent time with me. Plus they talk to each other through the electronic record, so everyone is on the same page. Loved that. I highly recommend going to Cleveland Clinic if you are in crisis, need diagnosis, or want a true expert on your case.
Anyway, after a lot of testing, talking, etc, I was "diagnosed" with Seronegative Spondyloarthopathy. There are four autoimmune diseases in this area. My crohn's antibody test came back positive. What most GI docs don't think about is that 10% of people with crohn's get the arthritic (autoimmune) symptoms first (enthesitis is a very common occurrence). So, that is what explains my joint pain, Achilles pain, stiffness, fatigue, etc.
However, truth is, that this does not explain everything. While having an ECG, they found a large amount of food in my stomach although I didn't eat for 7 hours prior. Sounds like gastroparesis, but I tested negative for that. Also, I have a hand tremor that was diagnosed as being a Benign Essential Tremor, however it came about at the same time as all the other symptoms. Also, my many doctors back home and at Cleveland Clinic do not agree on my diagnosis (I heard my local rhumatologist say to her assistant, "this is a hard case, so many things going on...).
Well, treatment now consists of swallowing about 30 pills every day. I was put on prednisone for the pain and inflammation, sulfasalazine to kick in and try to work on the same, gabapentin for the tremor and headaches, vitamin D because of my low level, and more... plus I am on meds for PCOS and thyroid issues.
Once I went on the prednisone at 20mg/day, I started to feel better and have more energy quickly. It felt great. About 3 weeks later they decided to start tapering me, with hopes that the other meds would start working. I tapered down slowly, but got to 8mg/day around the holidays. I then experienced a mini-flare - sleeping all the time, horrible back, neck, and shoulder pain. Called my rhumatologist who upped me back to 10 mg/day through February. I am already experiencing back prednisone side effects - moon face, weight gain, etc. But the docs don't know what to do with me.
So, I've been taking all these meds and through them have had oral thrush for about 6 weeks and two rounds of antibiotics haven't helped them. Also, I just had my blood tests done this week. So far, my sed rate, crp, and wbc have all GONE UP since being on the medication (including the prednisone). So, I guess it is all not working... at least not yet.
Although they kept me at 10mg of the prednisone, I am feeling fatigued and it is hard to get through a long day. Plus, the pain is still in my neck, shoulders and back. Plus, my Achilles pain has started to resurface.
All I can say is that this is definitely going to be a journey. All I want is to feel like I did before this all came on last year. Something tells me that it will never be that way again. Acceptance is key, I suppose.
I really appreciate these health boards. So informative and interesting. So glad to know that I am not alone!!
Diagnosed with spondyloarthopathy as a side condition to newly diagnosed Crohns. Also diagnosed with migraines, benign essential tremor, poly cystic ovarian syndrome (hysterectomy, 2006), and have substantial enthesitis.
The following user gives a hug of support to TheUndiagnosed: luca689 (02-05-2013)
"Acceptance is key." Yes,within limits. e.g. My syncope due to daily 3000 mg Pentasa for my Crohn's. Dosage halved now and syncope under control and I had been on pentasa for 20 years. What happened? I just turned 70 and that sure ain't 50!
Michelle, it's good hearing from you. Wow. I'm sorry multiple conditions were found but glad to read how well you're being treated at Cleveland Clinic.
It must feel very confusing to have certain labs (CRP, ESR, and WBC) go UP after being on your new meds for awhile. I wonder what's causing your thrush? Did your doctors voice any theories? Can steroids play a role?
I think infection can elevate WBC's. Don't they ramp up to fight infection?
In a similar vein, in lupus for one (that's what I have), when the immune system goes into high gear to fight a virus or infection (like all the horrible flu rampaging), someone with an autoimmune can get some good effects (fighting the intruder) but more of their usual bad stuff, too, since "bad" autoantibodies can increase along with "good" antibodies. Hmmmm.... I wish I understood more... makes one better appreciate what doctors know compared to what we know...!
Anyway, I hope things get back on track soon, that whatever is causing your new "hit" recedes. Let us know how you're doing. With hugs, Vee
Last edited by VeeJ; 01-12-2013 at 03:04 AM.
So, I was sent to an oncologist/hematologist. She looked at all my past labs. She agreed with everyone that there is a substantial inflammatory issue going on in my body, although no one can diagnose it exactly. She decided to run some more blood tests. Everything is like it was, but she also ordered a Firbinogen blood test - which came back elevated (592) which once again only means - there is a systematic inflammatory process going on. She also asked me about any lumps, and I have one small one - just over the back of my jaw - not quite in the parotid gland. She decided to send me for an ultrasound.
The ultrasound found two masses - the palpable one which is just over 1cm long, oval shaped, solid, and not moveable. The second mass is in the parotid gland, about 8mm, and also oval. Radiologist seems to think they are enlarged lymph nodes. Reading about lymph notes in that area seems to indicate they shouldn't be there. Not sure what all of this means or what to do. My oncologist just wants to "wait and see" but I'm sick and tired of being sick and tired. Given all my symptoms, I just don't think I should wait and see. Therefore, I have an appt with an otolaryngologist next week.
Anyone ever had these kinds of masses near the parotid gland?