Horrible Rib Area Pain in Back radiates to front??

I don't know if I am in the right place... I feel really silly posting my problems with you all who seem to have such serious health issues.... I sure would love any insight on what any of you may make of my symptoms. Here is what has been going on with me:

I have disabling pain in my ribs, left side, which originates in my back. This is how this all started with me:
I was sick in May with a bad cold, then went right into the flu, then right into a pinched nerve in my shoulder/back/neck and 5 days later this severe kidney infection with my WBCs at 17.2. I still have this intense pain in my left rib (9th - 11th ribs) area (constantly there & progressively gets worse during the day. Breathing does NOT make it worse. Doc thought spleen or cracked rib but everything has come back clear. It hurts when she pushes on it. Bending doesn't aggrevate it, although twisting down to the left hurts. I can't lay on my left side, laying on my back bothers it, and laying on my stomach hurts my front bottom ribs – although I could never sleep on my stomach anyway. I am on hydrocodone (Norco) for the pain that spreads up my left shoulder & under my arm up under my breast. Even on the pain meds its at a 4 or 5 & can get up to a 7 oro 8 without the meds. I don't go without them though, it hurts too much. (And I had 2 babies without pain meds or an epidural!) Sometimes it feels like the stitch you get in your side from exercising, without the hard time breathing part. I do my yoga daily (twice daily if I can help it) & try to keep everything stretched in case it's a muscle issue. I am at a health weight. I have been taking 800 ibuprofen 3 x's daily & it doesn't feel like something is coming out my back anymore, like it did in the beginning. I usually feel better in the morning, but the pain never goes away. It is ALWAYS there, just worse as the day goes on. Besides the pain I have lost 28 pounds in the last 10 weeks. That is what the doc is concerned about. I lost 3 more pounds since I saw her 2 weeks ago. I am now the thinnest I have been since high school (no complaints by me if there is nothing seriously wrong). I have struggled with my weight for years & years, but now it is just falling off. I have tried to gain weight over the last few weeks to put my families worries to rest (my brother who is 36 was just diagnosed with pancreatic cancer), but still ended up losing a few more pounds. I have had tons of tests.... and since nothing showed up on the CT scan & all the other tests, then I am not worried. If it is cancer they would have found it by now. She's worried about the intestines & palops & things, but I don't think there is any problems there. I am sure I don't have cancer, so I kinda think we should just find out what it is & focus on fixing some of these symptoms, like how I don't feel the urge to pee, why sometimes it burns when I pee & why I have this tremenous rib pain. I also have been swelling horrible, (although it hasn't been too bad the last couple days since it's been chilly). Although I have lost all this weight, my rings won't fit because my fingers swell, not just late in the day, but when I wake up too. I still do get those pelvic cramps, but I attribute that to the ovarian cysts they found... Even my stylist said my hair is falling out! The doctor said it was from stress, which with my brother sick I certainly am under a lot of stress, so it very well could be. Besides water in my ear (LEFT side!! Ovarian cyst is on the left side too, I swear the left side is falling apart) & extreme fatigue, they haven't found much besides periodic blood in urine, protein in urine a time or two, calcium crystals in urine, a little higher pH in urine, and some cysts on my ovaries which I was told are no big deal.

I can't believe that no one can figure out the problem. They thought kidney stones, then spleen or cracked rib, but nothing. She told me it is definitely NOT the kidney because it is tender when you push on it & she said it would not be tender if it was the kidney, that's why she thought maybe the spleen but it came back normal on the CT.

BTW, I have been having tachychardia, too. My resting heart rate has been around 100. Blood pressure has been really good though. But since I had sinus tachycardia when I was pregnant, they attribute it to that & don't think there is much concern in the heart department.

The CT scan came back clear except for mild prominence of the uterus, phlebolitrhs project over the pelvis & bilateral ovarian cysts.
Cytology - negative.
CBC & thyroid & everything else lab related came back in or near normal ranges...
Ultrasound (pelvic) found ovarian cysts, one 2.5 CM.
IVP - normal
Bone scan - normal
Rib/Chest X-ray - normal

Doc wants an MRI of the trunk. I am not sure what an MRI would show that a CT scan & Ultrasound & IVP haven't already cleared. Why spend the money?

She also did a pap (haven't had one in many years...) & pelvic & breast exam. Waiting for the results but she said everything looks okay, no bleeding. She wants me to do this hema screen test on my poo - yuck! Not sure I even wanted to bother with it, but I did anyway. I just think maybe we are digging a little too far. She was talking scopes next if the MRI is clea, which I am sure it will be since the CT scans were.

I try to be somewhat healthy, although I definitely am NOT a health nut. I don't drink coffee or alcohol or tea or soft drinks. I am pretty much drinking water all the time. I started drinking even more water when this first happened & they thought I had stones. But no stones, but I still drink all water. I don't have the best diet, but I do eat yogurt (activa) daily & I do eat salads & things. I probably eat a bit too much carbs, but my stomach really doesn't get upset. I have noticed a slight increase periodically in burping, but no diarhea or heartburn or anything like that. No blood in stools. Same very firm poo like always.

Anyone have any suggestions? I don't think it is kidney problems, doesn't feel like muscle pain to me (I could be wrong, though), and I don't think it's a gi issue... Gotta be something, though! Should I not do these tests? It has cost me so much already & if there was cancer or something seriously wrong they would have found it by now, don't you think? I am having a hard time trying to deal with the pain & symptoms & still live a regular life as a mother & wife & sister. This all started before my brother was diagnosed, but I just have the time to lay around being sick when there is so much that needs to be done for him while he is still here. I would love any and all suggestions...

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124 replies. Join the discussion

The reason that I want you to have the spinal MRI, is because you may have arachnoid cysts on your spine, causing you all kinds of pain. You are polycystic......you have the cysts in your ovaries. It is highly possible that you have syringomylemia. If you want to learn a whole lot about that possiblity, please go to ASAP.org...........read about others who have it, have had horrible experiences with doctors who don't realize what it is. Just go to that spot, and see if the 'shoe fits'. it's a good way to rule it out, as well.
Good luck to you!
Gladys
covenly1@yahoo.com

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So you think I shouldn't have this trunk MRI? The trunk MRI is different from the spine MRI, right?

I haven't noticed any muscle weakness, just generalized weakness/tired all the time. I am not sure if this is really my problem, but I TOTALLY appreciate all input. I will investigate further. : )

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I will "third" that MRI need
For example, MRI could show that you have something pinching or irritating a spinal nerve which could account for the pain you describe.

Take a look at an anatomy picture of how the nerves exit from your spinal cord and you'll see how its possible that if there is something pressing on one, you could get pain shooting out across your rib there.

Also, look up MRI and talk to your doctor about MRI with and without Gd contrast which could also be important, but some new findings do show an association with some problems with this for people with some medical conditions (like kidney). I have had about a dozen MRIs w Gd contrast over the years.

I am not medically trained person, but this is just the first thing that came to mind. It is good you are checking into all the things that your doctors think it might be. You might also ask them what comes to their mind and what they think are the likely and less likely possibilities.

I hope you find out and get corrective action soon.

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Thank you so much for your insight. Does this mean I should NOT get the regular MRI I am supposed to get? I need a SPINE MRI instead of a TRUNK MRI?!?

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Sorry, I wasn't looking closely enough--didn't realize your doc wanted "trunk" MRI--not sure what this is or what parts of the trunk area are covered since I've only had brain and spine MRIs. But you do think it started around the time you had a kidney infection, and that could be significant--or possibly coincidence...was the kidney infection diagnosed with imaging..and/or pain, fever and/or positive urinalysis?
Thought it was spine, but...why not discuss this with the doc. I don't know if the trunk MRI covers such detail as the spinal nerves if that is in question. They can give you both in one shot, but bill for two in my experience. Does your insurance cover MRIs?

Here's what I learned about spine MRIs, as well. At least in my region in the US, they have separate spine MRIs for c-spine, t-spine, and lumbar-sacral. So if your pain is going into your ribs (I don't have your previous entry in front to tell which vertebra) its a T-spine. T-spine MRIs can be harder to get since the area is not one of the more mobile (c-spine & lumbar) that are more commonly injured...yet consider the symptom you describe of pain radiating out along a rib from your spine (if I recall right) at a specific level. This is your "chief complaint," correct? Be sure the doc knows what your chief complaint is since they might think its some other thing if you don't specify. It sounds like they are really looking around, and I am not sure what kind of docs you have seen. If there's a chance its a spinal nerve, that is a neurologist that would be a good one to know. Keep in mind that docs in their specialty sometimes lose sight of problems outside their domain--eg the urologist might not think of a spinal nerve. More than one completely different thing can be wrong, too, and coincidentally occuring at the same time, too, and of course this is confusing.

Good luck sorting through. Hang in there.

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The doctor (PA-C) doesn't think it is the kidney, just a coincidence. My infection was diagnosed with labs, white blood cells 17.2 & urinealysis. I didn't have any burning or anything I was just really really sick with high fever, the shakes & body aches all over.

I have been giving financial help from the hospital to cover the MRI. Thank goodness, all these tests have gotten really expensive.

My pain is from 9th rib down to 11th rib on the left side in my back. That area is tender when the doc feels around. It spreads up my shoulder & under my armpit to just below my left breast. This is my cheif compaint. The weight loss is what the doc seems most worried about.

I have not been to any other doctors, just my PCP. No specialists or anything, since I don't have insurance & my doc accepts the sliding fee.

Thanks for the insight.

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It sounds like you have a lot of symptoms that reflect kidney disease. I HIGHLY recommend you see a good nephrologist. With calcium crystals, blood, and protein in your urine, significant radiating left side pain, burning when you pee, edema causing your swelling, with a previous serious kidney infection, fatigue, and significant weight loss, you have a lot of red flags that could involve your kidneys.

Your primary care doctor, who sounds like she's doing her best to help you and is being very thorough, has probably not received enough schooling and is most likely not qualified to make a diagnosis for something with complex symptoms like you're describing. It's time to see a specialist. They will work with you to help you pay, too. Don't let money or lack of insurance keep you from making appointments, having tests done, or asking to be taken seriously. You can always work out payment plans later. You deserve to feel better, no matter what!

It's important not to minimize how you feel -- take yourself seriously. Your symptoms are significant and need attention.

Ellen
Caring Counterparts

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Hi Ellen,

Me and huckleberrie met up elsewhere and decided to find out if we could find answers here. We share almost the exact same pain symptoms. However, I have chronic renal tubular acidosis (started showing up in the labs in 1992 but was ignored) and all but stopped peeing from about the middle of march til about 3 weeks ago. I'd go for days at a time putting out less than 500ml. I swelled up like a balloon. The gp put me on a small dose of lasix to keep the fluid off my lungs when I started to get wheezy. He's the one who discovered the RTA. I just started seeing him last september when I was having more trouble with my thyroid which he also managed to diagnose after 25 years of specialists scratching their heads. I have a very rare condition called pituitary resistance to thyroid hormone. The flood gates suddenly opened up when my sugar shot up and my hyperthyroidism kicked up a notch. I have no pain on urination, never had a uti in my life (I'm 48) and don't have stones. Never had one. My bp has also gone from normal to readings like 160/70. My pulse rate is ok cause it is controlled by the beta blockers that I take for my hyperthyroidism.

I saw a nephrologist last month. All of 5 minutes after a 6 week wait. He is the only nephrologist in this part of the state. As he was walking out the door after handing me a lab slip and telling me he'd see me in a month (actually 5 weeks), I asked him what I was supposed to do about the excrutiating pain. He said RTA does not cause pain so that was my gp's problem. He didn't examine me except to listen to my heart and lungs.

My eGFR last september was 90. In may it had dropped to 70 and has stayed there. I do not excrete hardly any sodium, potassium or chloride. My serum bicarbonate is now less than 10. CT back in june showed no abnormality in the kidneys. My platelets have gone low and my p-time is up. I am not anemic although I do have a now corrected vitamin d deficiency.

I too have a very caring pcp. He's trying his best and sending me to see specialists (I've got insurance) and all they do is toss me back at him. This has happened with the neph, the gastro and 3 endos. It's been going on for a year like this. The pain started getting bad in march and has steadily been getting worse. I'm taking tylenol #4 and the pcp added lyrica earlier this week which has been a real blessing. The pain's not gone but it's ever so much better with the combination of the two meds. I had a luq u/s this morn that my pcp ordered to look at a protrusion that's growing in my upper left abdomen just left of midline and the spleen which the ct showed has 2 cysts in it. I saw the u/s and the cysts are not large. However, the wand was really making me squirm. It hurt as she was trying to get a good look at the spleen. The bulge itself does not hurt but I can feel it in my side when it's pushed against.

What can a person do when they can't get a specialist to listen??? I could tell you some real horror stories of what they've been putting me thru this last year. I agree, a nephrologist/internist should be able to handle something like this. That's what they're trained for, isn't it? Why won't they? These specialist specialists are driving me nuts.

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Here is what I think. I believe that it is the initial viral attack that is causing at least some of your problems if not all. The rib pain is almost guaranteed to be nerve pain as well the shoulder, arm, side pain is likely also nerve pain ( the pinching).
I experience lots of rib pain both from the back radiating to the front and also in the front only. It is very narrow focal pain and goes inbetween the ribs. I have pain that is in the top of my should, goes down my neck, goes down my side from just underneath my arm. I have electrical shock pain, needle pain, pain that radiates from my spine and pain that goes into my spine. I have facial pain following the trigeminal nerves, I have pain in many other parts ofmy body also. All of my pain and other symptoms (not mentioned) started when I got a virus in September 2003. I got Parvovirus B19. It is absolutely most definitely nerve pain because it follows all the nerve paths and is very narrow, focal, along those paths.
I probably haven't given you much help but for what it's worth I had two cervical and head MRI's - no multiple sclerosis. I have seen two separate neurologists, don't have any definitive neurological abnormalities, have had a Nerve conduction velocity test which showed that I have a mild impairment of the median nerve (typically considered to be carpal tunnel) which occurred right after I got the virus. I do not have any positive blood work anymore but had a very high sedimentation rate and C reactive protein at the beginning and for approximately 2 1/2 months. I do not have a high CK rate, tested because of the thought of possible muscle degenerative disease (myositis or others). Have you had your sed rate tested recently?

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Hi accessn12,

I'm glad you and huckleberrie are helping each other.

I have had the same "pass the buck" frustrations with specialists as well as GPs. I've been "fired" by four doctors in the last year because I "ask too many questions" and they "have other patients". As it turns out, I was in adrenal crisis and dying right in front of them, but that didn't make much difference. Now I just go in, take the abuse, but don't leave until I get the test or medication I need. It shouldn't have to be this hard...

It sounds like you've had quite a rough time of it. I asked Sharmyn McGraw, who leads the St. John's Pituitary Patient Support Group, the nation's largest pituitary patient support group, about some of the symptoms you mentioned and she suggested a couple things. Have you been evaluated for a TSH-secreting pituitary tumor? How about for pituitary posterior lobe function? (It's responsible for anti-diarrhetic hormone). Dr. Vance in Virginia is a neuroendocrinologist, and you might consider contact Dr. Nieman at the National Institutes of Health (the care there is free).

You also might consider going to a university hospital where they have a medical school -- they tend to be more curious and willing to consider the possibilities...

We have to keep demanding that they take us seriously -- it's the only way our medical care is going to improve.

All the best,
Ellen

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Thanks Ellen. I really appreciate the reply. Me and huckleberrie are getting pretty desperate. This pain is really something else.

It's unbelievable what doctor's do sometimes. Adrenal crisis? Man, you must have had trouble getting anyone to take you seriously with that. Not too many docs would know how to recognize that. I went to the er in thyroid storm back in '91. It was a holiday weekend and my internist was out of town. They told me to give him a call when he returned. I told him I'd sit right there quietly until he got back cause I'd driven over an hour to get there (we're in an isolated rural mountain community). They decided to give him a call and he told them to admit me. Nine days in the hospital was what it took to keep my organs from shutting down any more.

Yeah, my gp finished off the tests for the pituitary secreting adenoma that were supposed to be done 16 years ago and no one got around to. It's in my charts that they were supposed to be done back then. I don't have a TSHoma. The gp's testing a lot of things but I really don't think it's a problem with ADH. It just doesn't fit that but I'll have him check it anyhow. He's a good one and will do just about any test I put on the shopping list. He's consulted with a thyroidologist at a conference he attended and talked to a buddy of his out at the university whose an endo that specializes in thyroids and pituitary. They came up with the diagnosis of PRTH, which I've known I've had for the last 14 years but nobody would look at the labs and listen. They all wanted me to have graves disease. The diagnosis I've been carrying in my charts all this time is "some type of variation of antibody negative graves". Yeah, right. They put me thru three years of hell treating me for graves. It was another gp who gave me the beta blockers that kept me going for 12 years before things went out of control again. The gp's currently trying to get a waiver from the insurance company to allow me to see an out of network doc so I can got to this guy for treatment. He's about 3 hours away but I think it will be worth it.

I don't think this pain is related. I've got one of those gut feelings that it's being caused by something else. Just can't figure out what and other than my gp, I don't think any of the specialists realize how bad it really hurts. They make me feel like I'm just a whining female.

BTW, doctors get annoyed with me too. Why do most of them immediately turn a deaf ear to an educated patient?

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Thanks for your nice reply. :) Yeah - the adrenal crisis has been interesting. I believe It started out as Cushing's Sydrome, the opposite of Addison's (Adrenal Crisis). (We'll never be able to prove it because the right testing wasn't done for 15 years - even after going to the Mayo Clinic in Jacksonville, FL). Last year I finally figured out I had Cushing's, but went to doctor after doctor (even the Director of Endocrinology at Shands in Gainesville) who insisted I didn't because my ACTH was high and my cortisol was really low. They never told me that what the tests showed was life threatening, and no wonder I felt like crap!! Luckily I was put on Prednisone for something else, and I felt so much better. But when I started trying to wean off, I got really sick again and ended up going to the emergency room. I fought and fought to communicate to the resident and the doctor and the head nurse that I was in adrenal crisis. They insisted I couldn't be, because my blood pressure would be low. (It was 125/40, which they insisted was normal. My blood pressure hadn't been under 185/110 -- on three blood pressure medications -- for 15 years. They released me with a diagnosis of "peripheral neuropathy".

Turns out I had a pheo. A pheochromocytoma, which is a benign tumor on the adrenal gland that secretes too much "adrenaline" -- norepeniphrine, epinephrine, and/or dopamine. It explained why my blood pressure is so high, why I am hot, sweaty and agitated all the time, why my vision was blurry, my hands and feet tingle and fall asleep, and why I have panic attacks with seizures. That's why I didn't die from the Cushing's (it causes uncontrolled weight loss while Cushing's causes uncontrolled weight gain) or Addison's once my adrenals shut down (it kept my blood pressure just high enough to keep me alive).

I've heard what thyroid storm can do to you. Whew! And to have to go through all that for Graves and not have it????? Thank goodness your GP sounds really good.

The bulge on your side is not good. Nor is the spleen-area pain. Reading over yours & huckleberries symptoms again, I realize I have a lot of them as well. Non-muscle left side pain including back and front, tenderness with pressure, can't lie on left side (will cause loss of consciousness and severe diarrhea), blood in urine and stools, mild incontinence, protein in urine, major edema, tachycardia/palpatations, uncontrolled weight loss, dizziness, nausea, and fatigue. If my other symptoms ring true, you might want to have your catecholamines tested. This will test for pheo if the levels are high, but some blood pressure medications and anti-anxiety medications can keep the results down, making them look normal (I learned that the hard way). This seems obvious, but left-side-only symptoms, it probably has to be kidney, adrenal, spleen, stomach, or colon... Lots of doctors forget about the adrenals - -and they work together with the pituitary and thyroid.

Also, if you were treated for Graves, I'm sure (or at least, I hope) they've tested you for an ANA Titer to see if you're autoimmune positive, and that they've sent you to rheumatologists for ruling out autoimmune conditions that attack particular organs...

I have access to www.uptodate.com, a doctor-level information service that provides well-written articles that summarize current standards for treatment for most conditions. If you go there and find an article you would like to read, they have given me permission to share them with others. Just let me know...

All the best,
Ellen

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I actually know quite a bit about Cushing's. When this whole mess started to really manifest itself physically back in 1982, when I was in my early 20's (I was diagnosed by the peds as a precocious/hyperactive child) I was put on prednisone for 2 years. The first thing the doc said when I walked in was hyperthyroid. The TSH came back normal. It caused a lot of muscle weakness and joint pain and I felt like crap. I saw a rheumatologist and received a diagnosis of some type of sero negative undifferentiated collagen vascular disorder. Yes, I've had ANA tested many, may times. I've also had almost every other antibody tested. All negative. Eventually, I had my Ig levels tested cause I'm constantly getting wicked and unusual infections. I'm IgG deficient. As one internist pointed out to one of the students, I'd probably be the only IgG deficient patient with grave's that he'd ever see.

Ah, the pheo. Yes, I've been tested for that. One brilliant endo couldn't think of any other test to run so he decided to test for that after I'd been exclusively on high dose beta blockers for 13 years. I've also had an abdominal ct scan. Sounds like you're a lucky woman. That's a pretty rare combination, isn't it? Funny how two different things can almost counteract each other.

Thyroid storm wasn't a real fun trip. I really think the er doc just thought I was just another hysterical woman. I've got a copy of my chart. His diagnosis: nervousness and anxiety. They actually got the right diagnosis of pituitary hyperthyroidism while I was in there. When I first went to see the first endo, he diagnosed pituitary hyper. They tried to control it with antithyroid drugs but I responded very poorly. They could make my TSH rise sky high and my T4 go critical low and the T3 would continue to keep my hyper. It drove him nuts. They kept testing thyroid antibodies and then one time, after my fourth raiu and scan, this one 93% with a TSH of 134, they tested TSI a week later and it came up borderline. Of course it did. You don't do antibody testing after a scan. It will always come back high. He was ecstatic. Now he could justify ablation with RAI. I said no cause I never did believe I had graves, so he rocked me for a while longer on various doses of meds and I finally told him that I give up. Three years was enough. I was taken off meds to await my TSH to fall into hyper range. Foxed them. lol A gp put me on the proper amount of inderal and I did pretty well for 12 years. I saw the gp maybe 4 times during that 12 years. Each time for a bacterial infection and he just continued to renew the script for the inderal. He thought I had PRTH too but wouldn't contradict the mighty endos.

I have absolutely no symptoms related to my digestive tract. It's one thing that has never given me a lick of trouble. It's a good thing. Although the gastro that my gp had sent me to diagnosed me with symptom less IBS a couple weeks ago, I was tossed out of the hospital for my scheduled colonoscopy and endoscopy when the anesthesiologist discovered that the gastro failed to tell him that I'm an uncontrolled hyper. Actually it was rather amusing. I do believe the gastro was rather embarassed when I reminded him that I had mentioned that fact 3 times when I had seen him. Just wish I hadn't had to go thru the prep and the 3 sticks to try and get the iv inserted. Then it would have really been a hoot. I get terribly annoyed at doctors who refuse to listen.

The bulge is in the abdomen. Right about where the top can on a six pack ab would be. It's about the size around as a can. I'm quite unhappy with the spleen area pain considering my platelets have been dropping steadily for the past couple months and have now fallen below normal and my p-time is elevated. These are on the preadmission labs for the canceled procedures along with a bicarb level 10. That subject never came up but I'm pretty ticked about that too after getting hold of the labs. I thought they didn't do those if you were at risk for bleeding??? Never mind the untreated acidosis which the gastro was aware of too. Do you get the impression that I'm a little bit angry?

I've got a great gp now. A local who went off to school and actually came back to his hometown to set up practice. He's right there in town and I no longer have to travel hours to see someone. I trust him to help me get to the bottom of this. If nothing else, he's given me enough stuff to keep me mellowed out and the pain level toned down considerably. He lets me do a lot of the research. Being the only doctor in the county he's kinda kept busy but he always listens and reads what I bring him. Access to uptodate would be fantastic. I get so frustrated when I run into a paper I'd really like to read and can't really afford to buy it. Those pay per views can really add up.

So you've got the same pain too? What's been done about yours? Has your pheo been removed or is it under control with meds? Sounds like your's is combined with gi problems but it's very possible that the two aren't related at all. What's your take on it? Oh, don't forget to add pancreas to your list. Quite a bit of it lies in that area too.

I'm really hoping the u/s shows something. I am so tired of this I could scream.

Thanks for the help,
Helen

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Thanks so much for everyone posting such great information....

I got the results of my abdominal MRI with & without contrast:
"There is some increased signal in the subcutaneous soft tissues adjacent to the left flank over the area of concern (they put a marker on me). This could be due to edema, possibly related to trauma. A mild cellulits could give this appearance, but no abcess is seen. The underlying splenic tissue demonstrates normal signal intesity on all echo sequences. The liver is equally unremarkable. No bilary distension is seen. The gallbladder is normal. The kidneys, adrenal glands and pancreas demonstrate normal architecture throughout. The lung bases are clear."

So. My PCP doesn't know what to make of those results. Because of these results & the fact that I tested postive 2 out of 3 of my hemoccult tests, she is sending me to a general surgeon. I have to have a EGD & colonscopy. I am NOT excited, to say the least.

Has anyone had similiar results?

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I had really thought it was my kidney, too. Now I wonder if it ever was a kidney infection. How do you know for sure it was a kidney infection & not some sort of other infection? At the time of the infection I didn't have any burning with urination, just violent shakes/shivers, high fever, malaise, & intense pain in my entire trunk area.

I haven't had my urine checked in a few weeks.... The last couple tests showed positive when dipped for blood or protein but when sent to the lab showed none. So I was told everything was fine with that.

Now that they are finding blood in my stool, they are going a whole other route. I am being referred to a general surgeon. I plan on letting him know that I had blood in my urine often, with crystals & protein periodically & see if he follows it through. If not, should I worry about not going to a nephrologist? Can you just make your own appointment to one or do I need a referral?

I have already had an IVP, CT scans (stone protocol then later a regular CT scan with contrast), MRI & tons of bloodwork that showed that my kidneys were fine. Is there some other test out there I have missed that would show something with the kidneys? They first thought it was the kidneys until they did all that testing & everything came back normal....

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If you aren't already taking antibiotics, they can do a urine culture and if it comes back positive, it will tell you that there's an infection somewhere in the kidneys or urinary tract. Then they pretty much figure it out by the symptoms as to where it is.

I still think the general surgeon's a good idea. Tell him everything. They're more likely to look at the whole picture especially since he isn't sure what he's looking for. Depends on the neph whether you'll need a referral or not. Some docs will take anyone who calls. Some require a referral from another doc. Ask the surgeon. I'll guarantee he knows some of the better nephs. Ask him if you need to see one and if so, who would he see himself.

I'll be seeing my gp next tuesday and the neph, speedy Gonzales, next wednesday. I'll see if he stays in the room long enough to provide any information.

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They kept doing the culture, but it kept coming back negative. I get periodic burning & don't ever feel like I have to go, but everything shows the kidneys are fine, so I guess I shouldn't be concerned about it.

We'll see what the gen surgeon says. I will post when I know more.

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I don't know what a CK rate is or sed rate.... they did a bunch of testing on my blood & urine & said everything was coming back fine. I do really need to get copies of my labs. There are so many to go through. Ugh..

It seems strange to me that all this happened after a severe sickness & noone thinks it's related. I do, I'm with you. But I also think that maybe being so sick put such a stress on my body that I began losing weight & having blood in my urine & stool along with this pain. I don't know. Maybe I am just out of my mind!

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A sedimentation rate (ESR) for erythrocyte sedimentation rate is a test where they take some of your blood and see how many red blood cells (erthyrocytes) settle out of (or become "sediment")solution in a given time. This gives a very clear indication of whether or not there is an active inflammation or infection occurring in your body. The C-Reactive protein or CRP is another test that is used to determine an ongoing inflammation although it is not as commonly used as the ESR because it is more expensive and not necessary unless there is an elevated ESR or something such as Rheumatoid or another autoimmune disease is suspected.
CPK stands for creatinine phosphokinase. High levels of this enzyme will indicate that muscles are being damaged by inflammation. They also can indicate inflammation.

Note - it is possible to have "normal" bloodwork and still have inflammation, just not the typical type. In my reading on Parvovirus some researchers discovered that Tumor Necrosis Factor alpha and Interferon gamma are present during acute and chronic fatigue occuring from the presence of the virus. These molecules are "pro-inflammatory cytokines". They have a specific purpose but if they continue to be produced in the body, can make a person feel very ill and cause other problems in the body.

Bottom line - Ask what blood work has been done, ask for a copy of all the bloodwork. Ask when, if at all there was any abnormal blood work. If blood tests were taken early enough then surely there would have been something abnormal showing up. Ask to have the blood tests explained and discuss what else should be taken given what symptoms you are still having. Force the issue. That was my mistake. I know it is hard when you are so sick but it is an absolute must. Be very forcible but polite when you speak. Restate everything you are feeling and how it started exactly when you got sick with a virus. It is well known that some viruses can cause these prolonged illnesses.

Regarding weight loss. I too have lost lots of weight. I couldn't eat because of how poisoned my body felt. Even looking at food made me sick. In the past couple of years I have started having a problem with swallowing. Food will actually stay at the top of my throat and take forever to go down. It is absolutely horrible when that happens. I started out at 141, dropped 12 lbs in the first couple of months then dropped another 5 in the next couple. At one point I was down to 117 lbs. Thankfully I am now between 120 -125 lbs. However, that is still way to low for me. My face is very gaunt looking and my legs look like sticks with flabby flesh hanging on them. The only thing that saves me is that I do have times where I get hungry and have an appetite.

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Hey Huk,

So my partner in pain, they now want to rule out ulcers via endoscopy - have you gone this route yet. If those tests come out negative they are yanking out the gallbladder.

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