[wkdness]

Hi...I have had two blood tests for Lupus and both have come back inconclusive. Have been seeing a nephrologist yearly for a couple years now just to monitor protein and keytones in urine. He says they are low but just should be watched. Nobody can find a reason for it. An ultrasound detected a mass on my left kidney a few years ago but the CT scan didn't so they said it was an artifact. Also both kidneys were mildly swollen...I am 43. Other than that I was hospitalized for 8 days a year and a half ago with pneumonia. I get bronchitis alot. I am allergic to dust/pollen/feathers/tobacco. I get ganglion cysts on my wrists and have had them a couple times on the front of my ankle since I was 12 yrs old. I was dx'd with mild carpal tunnel in both wrists and mild cubital tunnel in left elbow. The doc says probably bursitis in elbows as well as they ache in the mornings and when i carry things or keep them bent. I was just dx'd with achilles tendonits and need an ultrasound for a bump on the tendon and was prescribed neproxen. My hips ache quite often. I dont seem to get skin rashes too much unless im around dust and Ill get allergic rash on my arms and chest. Sometimes i do get a pain in the middle of my chest almost feels like a pulled muscle and if i stay still for a while it'll go away. I get tired but feel like its probably depression due to stresses in life. Sometimes I can sleep for twelve hours and two hours later its like a wave comes over me where i feel like i need to sleep again. It seems like all of this should be coming together somehow??? ANY ADVICE please?? thx Sonja

 

[greenhaggis]

Hi Sonja and welcome to the site!

You certainly have had lots of things going on with you!

Certainly worth still looking for an answer if these symptoms are still occuring!

Perhaps seeing an Immunologist or Rhuematologist may be of more help putting pieces together!

 

[Katharine]

Hello Sonja and :welcome:

You do indeed have a lot going on and it must be very frustrating. I certainly wouldn't give up looking for the answer as you know your own body well enough to know that something is wrong and that you shouldn't be feeling this way.

Your tiredness may be due to depression but it may also be due to something else. It's very easy to convince ourselves that a whole host of symptoms are stress linked but they aren't always.

When you say that blood tests for lupus were "inconclusive" what exactly do you mean by that? What tests were run and do you have the results (eg. if ANA, what titer)?

I would definitely ask for a referral to a rheumatologist (and seek recommendations here for one in your area that is specialised in auto-immune diseases). Usually rheumy's are the lupus and auto-immune specialists but some people here like greenhaggis have found a good immunologist who is also able to treat them.

You may already have looked at the list of ACR criteria here on the site but if you haven't it might be worthwhile seeing if anything else fits for you.

http://www.thelupussite.com/forum/showthread.php?t=33123

Lupus is incredibly complex and the symptoms people experience can be very varied so if your GP is saying "those are not typical lupus symptoms" don't just give up trying to find out what is wrong. Of course, it may not be lupus but at least if you are very sure it isn't, it may provide another direction to look in.

bye for now,
Katharine

 

[Maia]

You certainly have a lot of symptoms that are consistent with lupus; there are a lot more than 2 blood tests that can be helpful in diagnosing lupus. Were those blood tests run by the GP or have you been seen by a rheumatologist yet? I would recommend a rheumy given your symptoms.

You may want to get copies of your blood tests for your records, and to know exactly what the titre/values were that are being called "borderline".

It seems like this is something that you really need to pursue, and possibly get a second opinion if you need to. You can search through our site for doctor recommendations or ask in the Find a Doctor forum as well.

Good luck and I hope you find some answers soon as well as some helpful treatment

 

[wkdness]

thank you for your timely responses. The tests were done by the nephrologist who's following the kidney probs. I didnt even know he did them the first time but this time he told me he was doing it again and that it had come back inconclusive the last time 6 mths ago. I saw my GP today and asked him about the results as i hadnt heard anything back from the nephrologist and he told me that it was "inconclusive" again. I have no idea which tests were done. The GP says to call the nephrologist and ask him what his diagnosis is or what that test result means. It seems like he isnt being proactive tho becuz im not going back there for a year and nobody called from his office so i just assumed everything mustve been OK. Ive read that keytones in the urine are something that shouldnt be ignored. Thanks Sonja

 

[Lily]

Hi Sonja,

I agree that it would be helpful for you to understand what is being tested, what the results are and what they mean. You seem to have some problems that a Rheumatologist would be able to investigate further anyway, so an appointment with one might be very helpful.

According to most sources the presence of ketones in urine can be from many things, so I assume that your Nephrologist has some understanding of why it is so in your case. I'd ask him straight out as it is not something that usually shows up in Lupus anyway.

From MedlinePlus:

A positive test may indicate:

• Abnormal nutritional conditions
  • Anorexia
  • Fasting
  • High protein or low carbohydrate diets
  • Starvation
• Disorders of increased metabolism
  • Acute or severe illness
  • Burns
  • Fever
  • Hyperthyroidism
  • Nursing a baby (lactation)
  • Post-surgical condition
  • Pregnancy
• Metabolic abnormalities, including uncontrolled diabetes or glycogen storage disease
• Vomiting frequently over a long period of time

Low protein in urine is not a normal finding, any protein at all in fact and indeed it can be a sign of Lupus affecting kidneys. However in order to make an informed comment it would depend on how much protein exactly (sometimes a trace amount can be from skin contamination and means nothing). Bear in mind there are other reasons for protein being found in urine apart from Lupus too.

With some of your symptoms I am wondering if anyone has done testing on your thyroid?

Hope you get some answers soon,

love
Lily

 

[wkdness]

thx Lily...I know today protein was +1. I dont know what all these tests are yet...but ive also heard the numbers 168 and the last test for protein before today was 369. I think he said something about milli something per something...lol sorry...i just dont know much about this yet except what the doctor says. The nephrologist just says he's just not too worried yet that he has patients with values in the thousands....My blood pressure has always been fine 120/80 and blood sugars are normal but i am overweight but have lost 27lbs in the last 3mths with slimfast 2X a day. I hope slimfast isnt bad for whatever the problem is. I also see alot of warnings about kidneys on the naproxin the GP prescribed today for achilles tendonitis. I just dont want to do anything to make things worse.... sonja

 

[Lily]

Hi,

Those numbers sound like he did a 24hr urinalysis, did he? The 168 & 369 anyway. If so anything over 150 is considered abnormal but it certainly doesn't deserve the comment I have patients in the thousands because obviously there is something wrong! Even if it's not that high it points to some kind of problem and taking your other issues into account could prove relevant. A patient with Nephritis associated with Lupus would have readings over 3500 of protein in a day, but that's already advanced disease requiring pretty hefty drugs.

I would definitely see if you can get a referral to a Rheumy to be investigated more thoroughly, and tell them everything you have going on.

Good luck and if we can help further don't hesitate to ask.

love
Lily

 

[wkdness]

thanks...to all of you for helping. Monday Ill call nephrologist and ask him what the heck the test results mean if they cant say pos or neg...and I'll ask about a referral...I need to figure out if I'm tired because I'm depressed or if I'm depressed because I'm tired...

 

[onetay]

Hi and welcome to the site. It sounds like you do need to be monitored and watched. There sounds like something going on but it could be the allegeries and general pains. I would stay on the doctor for a more conclusive answer if it was me.

I hope you are feeling well and doing well.

 

[KarolH]

Welcome to the boards.

The others have given you great advice here and I hope you get things sorted out soon. Sounds like you have dealt with a lot lately.

Join us in the chat room sometime and sure hope to get to know you better.:wink2::wink2::wink2: