Avatar universal

Many symptoms; pain, fatigue, varying heart rate,

I am a 30 year old female.  I have had horrible back pain for 2 years.  It started suddenly and originally they thought it was a kidney stone.  But it never went away and a CT showed no stones.  The pain is in my mid-back. I do have mild end plate degeneration in my thoracic spine but the docs don't feel this explains my pain.  The pain is so severe it makes me sick to my stomach and weak feeling.  Doing anything for more than about 30 minutes causes the pain to increase, but sitting is definitely the worst.  

I also have a lot of other symptoms like episodes of low grade fever, all over joint pain, and extreme fatigue.  My kidneys ache at times and they occasionally find blood in my urine.  My heart rate varies a lot (I've had an EKG) 130 bpm for 30 seconds then 85 bpm, then 140 bpm, etc.  I take 80 mgs of Propranolol a day to control my heart rate and migraines.  I was diagnosed with vasculitis after I got a terrible looking rash (bleeding under the skin) and my C reactive Protein was elevated.  I have a small cyst in my liver.  I have always had really dry eyes.

My ANA test was positive but they thought it was possibly due to the Propranolol I take and took me off temporarily and the ANA went to negative.  My anti-ssa and anti-ssb tests are normal.  They also did a blood test to check for strep infection as this all started after a bout of strep throat but it was negative.

My chief complaint is pain, horrible pain that controls my life.  I feel like my bones ache at my very core.  It hurts to sit and I can hardly do anything any more.  I am constantly tired and have no energy.  I feel like a miserable old woman.  The docs have suspected an autoimmune disorder but haven't really diagnosed anything.  They say I have "a bad back" but it is so much more than my back.  My whole life has changed, I can't do the things I want to do and can't keep up with household chores or my two young sons.  

So what can cause horrible pain in your spine, blood in your urine, kidney pain, vasculitis, extreme fatigue, occasional fevers, heart rate problems, etc.  The only thing that helps is pain meds and steroids help some.  Any ideas?    
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Avatar universal
Hmmm... Let me try to answer all of your questions...

I have had two MRI's of my thoracic spine and one of my lumbar spine.  All showed the same thing.  "mild end plate degeneration" and a small disk herniation at t7-t8 that goes toward the front rather than the back.

I have had a complete blood work up for kidney and liver function and both were fine.  No issues at all.  I've also had an two ultrasounds on my liver to check the cyst and make sure it's not getting bigger.  It hadn't grown at all in about a year.  No symptoms of jaundice or itching.

I have had multiple scans (two CT scans and three MRI's) of my brain (if my headaches change they want a new scan).  That along with my history of headaches with aura before them accompanied by vision changes and severe headaches accompanied by light and sound sensitivity and nausea was what prompted the diagnosis of migraines.  And migraines meds help.  I take Propranolol to prevent migraines and it works, and Relpax for migraines I do get helps too.  It's definitely migraines.

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Avatar universal
hi, yes i have had a full workup of my kidneys and the are fine.i had a stroke  about 3 years ago because of severe eclampsia while i was pregnant.after that i found out about my potassium. i now am dealing with chronic pain all along my right side especially in the pelvic and abdo,minal region.also under my butt and inthe groin.whatever is happening now i think has been going on for a long time.i am going to doctor after doctor and nothing is coming up abnormal except my potassium levels.its weird to me but i have come acroos many doctors who just don"t listen,oh i also had a rectal prolapse which i had surgery for about a year ago.any thoughts?
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534785 tn?1329592208
Low potassium is typically a kidney problem...have you had a full renal workup done?
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534785 tn?1329592208
Hey, I have some thoughts on what might be going on with you, but I have a lot of questions that I want to ask before I provide my theory, if you don't mind, since some of your answers will help build up or shoot down what I think is happening:

Have you ever had your liver function monitored via bloodwork with a liver panel? What were the abnormal results? In particular, was your alkaline phosphatase and/or bilirubin levels elevated? Do you experience symptoms of jaundice or itching, ever?

How do you know you have migraines? Have you ever had an MRI of your head, or was this diagnosed based on severe headaches, only?

Do you have low albumin levels? Or elevated albumin levels?

Here are my initial thoughts, without knowing your answers to the above questions:
I don't think you have multiple myeloma, but I think this should still be investigated, as it does sound plausible. I think you have a liver disorder (i.e. something like primary biliary cirrhosis), potentially autoimmune in nature, and that this is the root of most of the symptoms your experiencing.

What may be happening is your liver is experiencing damage for some reason, likely resulting is low albumin levels, elevated bilirubin levels, and elevated alkaline phosphatase levels, I'll bet. This can cause problems like dry eyes as the disease progresses, and softening and fragility of your bones. This could explain the end plate degeneration in your thoracic spine; I imagine the rest of your bones aren't in tip-top shape at this point either, especially with your low calcium levels. This would likely explain your "bone pain" that you're feeling.

Another clue regarding your condition can be found with your levels of C-Reactive Protein, which measures the concentration of a special type of protein produced in the liver that is present during episodes of acute inflammation or infection, though CRP tends to only provide more general information, rather than specific information. It seems to me that your elevated CRP levels are pointing toward a problem with your liver.

The occasional blood in the urine and kidney pain is just your body telling you that you're fighting an infection, one that is probably worse at times, and not so bad at other times. Your heart rate and blood pressure can be affected by this, as well.

I would recommend starting to take daily calcium supplements in a high dosage--1000 - 1200mg, but please clear this with your doctor first (because taking too much can have side-effects since your body just doesn't flush it out harmlessly). Look into having a full liver workup done--imaging, bloodwork for autoimmune hepatitis, primary biliary cirrhosis, cystadenoma of the liver, hepatic adenomas, etc. You may also want to look into parathyroid functioning just to have everything checked out--hypoparathyroidism would explain your low calcium levels, but I because your calcium levels aren't THAT low...I would venture a guess that they're slightly low probably as often as you see blood in your urine--when the infection flares up and is particularly bad in your system, your calcium supplies decline because your kidneys help control this, along with your parathyroid glands.

And do you know what would affect your heart's function? Calcium supplies--aka levels--in your body, because calcium is necessary for normal excitation-contraction coupling in cardiac cells. Basically, for your heart cells to function electrically normally, they need a certain amount of calcium (and if the supply of calcium is inconsistent, this may cause the jumping up and down in the heart rate that you feel--though I'm just making an educated guess about this).

I'm not a doctor, so these are just my thoughts, though you can rest assured that I have some medical background as a Chemistry and Biomedical Engineering double major in college. I think your symptoms are all interconnected, and all stem from your liver being damaged, in one way or another. Many autoimmune liver problems are much more common in women than in men. In your case, I don't think your liver cyst is something to be overlooked, as is the case with many small, benign liver cysts. I think it's saying "X marks the spot".

Hope this helps, and good luck! You deserve to be treated and feel better soon, so you can get on with enjoying life.
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Avatar universal
i am having the same exact symptoms and some very similar.i am constantly on pain meds and my potassium is always low.i have had test after test and nothing. i started thinking out of the box and am going to get checked for parasites in colon.also going to a hip doctor.i too have a little boy and it is really hard not to be able to do everything i want to with him.if you want i will let you know what they come up with
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563773 tn?1374246539

Hypocalcemia is an electrolyte imbalance and is indicated by a low level of calcium in the blood.  The normal adult value for calcium is 4.5-5.5 mEq/L.

Causes for hypocalcemia include vit D deficiency,chronic renal failure,magnesium deficiency,alcohol intake and certain types of leukemia or blood disorders.But hypocalcemia can’t be causing these symptoms.I feel that the cause lies in the spine itself.

Have you got x-ray or CT spine or MRI spine done to rule out various pathologies of the spine. Ankylosing spondylarthritis,degenerative disc diseases may be related to this kind of pain.

Hypercalcemia is strictly not pathognomic of multiple myloma.Sometimes patients may not show the typical pattern.I feel that most of your symptoms fit in the category of multiple myloma.Pls discuss this option with your doctors and get Serum protein electrophoresis (SPEP) done.

You can log on to following website and learn more about this disease.

Hope it helps.Take care and regards.
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Avatar universal
Any other ideas?
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Avatar universal
The idea of multiple myeloma is very interesting and not one I had heard before.  Thank you!  However, I did a little checking and found that usually in MM, the blood calcium is high.  My blood calcium is low.  (I couldn't fit everything into the original post.)  Do you know more about hypocalcemia?  My calcium is not *really* low, just low.  My doc kind of shrugged when I asked why that would be, and told me maybe I should start taking calcium.  Also, my white cells were low when they were last checked.  Doc said it looked like I had a virus.    

I have such seemingly random symptoms that it's frustrating.  Not to mention that my own doc who I have seen for years I think has basically written me off as a mental case.  Her last suggestion was to try Zoloft because she thinks I worry too much.  Ya think?  I'm in constant pain and my life, and the lives of my children, are slipping by without me be able to participate!  That might be a bit upsetting.  So I started taking Zoloft, and surprise surprise, it hasn't helped.

I'm trying to think of all the odd symptoms that I have and add them in so that nothing is missed.  Oh, I also have shortness of breath at times.  I can be just walking around and feel short of breath.  I notice it most when talking on the phone while trying to do things around the house.  Light household chores and talking just seems to take too much breath.  I am also extremely intolerant of heat. I used to be cold all the time and now I am always uncomfortably hot.  

If you have any other thoughts or ideas, please share.  Trust me, it is much scarier knowing that something is wrong but not knowing what is.  At least if you know what it is you can figure out how to fight it.  Like GI Joe said, knowing is half he battle!  ;)      
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563773 tn?1374246539

The symptoms which you have described are suggestive of an autoimmune disorder and another disease which I can think of in your case is multiple myeloma which is a tumour of blood cells, although this occurs at a little older age. Please don’t get scared but it’s advisable to get this possibility ruled out. It is diagnosed by Electrophoresis (EP) which measures the levels of various proteins in the blood or urine. When performed on blood, it is called serum protein electrophoresis (SPEP). When performed on urine, it is called urine protein electrophoresis (UPEP). An additional test, called an immunoelectrophoresis (IEP) or immunofixation, may also be performed to provide more specific information about the type of abnormal antibody proteins present. Assessing changes and proportions of various proteins, particularly M protein, helps track the progression of myeloma disease and response to treatment. Myeloma is characterized by a large increase in M protein, which appears as a "spike" on electrophoresis. X-rays and other imaging tests may also help. The gold standard method of diagnosis is by bone marrow aspiration/biopsy.

Please discuss it with your treating physician and pl do keep me posted.

Kind Rgds.
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