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What is it?

For nearly a year I've been experiencing symptoms that cycle - the cycle started with about one week of symptoms followed by one week symptom-free, and now cycles faster.  It starts with itchy skin (no redness) from the ankles to knees, and on the abdomen and chest.  Then a rash starts from the abdomen to the neck along with general achiness.  The recurring low-grade fevers start in the late afternoon and last until around 3am with chills and sweating throughout the day.  Vision becomes blurry at times with a sensation like there is sleep in my eyes - everything checked out fine with the opthalmologist except that the fluid in my eyes is slightly stringy.  Other symptoms include slight weight gain, extreme fatigue, and red spots under the skin all over that look like someone poked me with needles everywhere.  All tests (bloodwork and ct scans) come back normal except for the presence of monoclonal protein.  Even tests for inflammation come back normal despite there being observable redness and swelling due to the rashes.  I have seen an infectious disease specialist and hematologist/oncologist who are both stumped.  A dermatologist recently diagnosed the rash as pityrosporum folliculitis, and the rash is responding to treatment - however, continues to cycle.  Any ideas what this is?
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11 Comments
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875426_tn?1325532016
So they checked for lupus?  Have they checked any of your endocrine hormones, such as thyroid function and cortisol levels?
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They've checked for lupus three times.  Ten years ago I tested within limits, though barely, to be diagnosed as such but the doctor wanted to wait and see since I wan't experiencing severe symptoms.  I've been tested twice in the past year for it and have been told test results are all normal.  I asked if it's possible for false positives or negatives, and was told no - not sure if that's true or not though.

Thyroid has been checked numerous times and has been normal each time.  I asked if there are any parathyroid conditions (not sure if that's the right term for what I'm thinking) that don't show up on thyroid tests but could still explain the symptoms.  Again, I was told no.

As for cortisol, I'm not sure if that's been tested and will ask my doctors about that.

Thank you
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875426_tn?1325532016
The four parathyroid glands are on your thyroid.  They control calcium levels in your body.  Usually I believe you would have high levels of calcium in your blood if there was a problem with the parathyroid.
Also, have they ever tested you for lymphoma, including cutaneous lymphoma? See PM.
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Avatar_f_tn
Thank you for the information.

At times my neck feels swollen, as though it's the salivary glands, but when they do CT scans everything checks out fine with no swelling in the glands or lymph nodes.  

The oncologist/hematologist I see has tested for lymphoma, but I'm not sure if specific testing for cutaneous lymphoma was done - I will mention this to him.

I'm curious about cortisol being an issue since I have a history of UTI's, miscarriage, acne, and progesterone deficiency which I believe can be correlated to cortisol deficiency.  I'm also deficient in potassium, and doctors have been unable to find a cause for this - not sure if there is a link between that and cortisol or whatever this is.

Again, thank you for the information - I will check with my doctor to see if tests so far have ruled any of this out.  
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Avatar_f_tn
Potassium deficiency, can be a sign off cushings syndrome or disease, also can acne, and frequent UTI,
I would have a cortisol level blood test, preferably about 8am in the morning, as you may have high cortisol levels in the blood.
Have you been tested for PCOS also, it sounds like you may have hormones a bit whacked out here,
Cortisol deficiency is usually addisons, which causes weight loss, sickness weakness, and occassionally skin colour changes, as in a suntan look.
Too much cortisol can cause acne, frequent infections, and potassium defiency.
I would also ask for the doctor to test you for aldosterone, renin, at the same tim as the cortisol blood test.

Good luck

Hope this helps you a little bit on your journey
Nicola
Ps, Do you get allergies? or do you have allergies
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Avatar_f_tn
I definitely am concerned about the potassium deficiency and wonder if that's a symptom of the underlying issue.  I'm not a pill person and would be thrilled to find out what's causing the low potassium so I don't have to take a supplement every day.

Other than drug allergies to sulfa and minocycline and food allergies to coconut, I'm not aware of any other allergies and haven't noticed that the cycle of this illness correlates to any patterns of food, environment, pets, etc.  It's been hard to find information in layman's terms regarding the monoclonal protein issue, but I did come across an article that stated a slight link between allergies and the body producing monoclonal protein in response - unfortunately, it's hard to tell what's legitimate on the internet and my doctor didn't feel there was a correlation.  So, I'm not sure if it's worth pursuing testing for a potential allergy that could be the culprit or if that's just another expensive dead-end.

Thank you for the information - I'll add these questions to the list for my doctors.
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Avatar_f_tn
Pottasium deficiencies can also be seen in autoimmune thyroid conditions also.
But i definately know they can be an underlying complication of Cushings syndrome, or disease.
Your best bet is searce cushings syndrome, and see if the symptoms are similar to how you are feeling.
How are your kidneys? do you have any problems with them?
Try to see if the GP will give you the blood tests i stated above, he might find a problem somewhere along the line , which should point him in the right direction.
Hope this helps.
If you need more info give me a shout
Take care
Nicola
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Avatar_f_tn
I'm assuming that the CT scans would have picked up on PCOS if that was an issue - is that correct?

As far as cushings syndrome, the symptoms line up except for the weight distribution.  The only place I've gained weight is in the waist/abdomen - it's only been a ten pound weight gain, but since I started at 115 pounds it's a bit significant for my build and height.  Also, my blood pressure is low and has been since diagnosed with the potassium deficiency about ten years ago.  It typically runs 90/60 at the highest.

As far as kidneys, there is a history of kidney stones shortly after pregnancy 4 1/2 years ago.  There is one small kidney stone that is lodged in the left kidney - the urologist said it won't cause damage and because of the area it's in, it would cause more harm than good to remove it.  There is a history of kidney infections, though it's been years since having one.  There was also a question of the kidneys dumping, but tests came back normal despite symptoms showing otherwise.

I will ask to have the cortisol, aldosterone and renin tested, and also double-check with my doctors to be sure that PCOS and lymphoma have been ruled out.

Thank you
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Avatar_f_tn
The ct scan should have picked up if you had cysts on the ovaries, what part of the abdomen did they scan? and did they go right down to the pelvis.
Cushing disease is a really hard disease to diagnose, many cushings patients suffer for years before diagnosis. or should i say until it becomes really obvious,
Have you had any purple like stretch marks on the skin anywhere?
With adrenals the place you put the weight on is the stomach, belly,abdomen.
You have just mentioned you have a kidney stone.
Well i would be asking for a proper hormonal blood panel done.
You need to check for PCOS, CORTISOL, ALDOSTERONE,RENIN, CALCIUM, AND  PTH that is a parathyroid hormone blood test.
too much calcium can cause kidney stones, but check the PTH which are the parathyroids.
Also blood glucose, and thyroid even though you have said youve had it done.
When you get the results, if you can post them and i will have a look but make sure you put the reference ranges on
Each lab use different ranges , thats why im saying that.
All endocrine illnesses sort off overlap each other, thats why its best to test the lot.
Take care
Nicola
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Avatar_f_tn
Each of the four CT scans were for the pelvis/abdomen/chest and the fourth one was also for the neck, so I'm guessing that out of four scans they would have noticed something if PCOS was an issue.

I do have stretch marks that have shown up in the past year.  I did have twins 4 1/2 years ago (didn't notice stretch marks then) and assume that they are just noticeable now that I've gained additional weight in the tummy area.

Blood glucose has always been within normal limits, though on the low end.  It does seem to drop to around 80 when the symptoms are at their worst, but my doctors don't think there is a connection between the two that would explain what's causing all of this.

The oncologist that oversees my case will meet with me tomorrow to order tests - I'll ask about getting those results to see what you think.

Thank you so much
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Avatar_f_tn
Good luck, im here if you need anymore help.
Nicola
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