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Donna V

Kidney problem?

8 posts in this topic

Hi,

 

I was diagnosed with mixed connective tissue disease earlier this year (polymyositis, scleroderma and lupus) and am wondering if I should be concerned that I am having back pain at the lower thoracic level bilaterally. It started on the right side but is now on both sides. It is pretty persistent. I've been taking a lot of Tylenol lately, but never more than 3 grams a day for the pain. (I know, it can cause liver complications.) My urine seems practically colorless and is foul smelling. Are these symptoms for my rheumatologist to analyze or my primary care physician? Does this sound familiar to anyone? :huh:

 

Donna

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It may not matter which one, but please have one of them look into it for you and I'd go with whoever could see me the soonest. I will send wishes your way that it is not kidney related.


I may have Scleroderma, but Scleroderma doesn't have me!

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Hi Donna,

 

That's a good question and raises an issue we all frequently face, as in who to see for what?

 

Please keep in mind I have no medical training. In my opinion, this is one for your primary care doctor, asap. Most likely, a bladder or kidney infection. That's very treatable but you want to catch it before it gets out of control.

 

I find it can drive me nuts to try to figure out myself whether an issue should be saved for a specialist or handled by my internist. So years ago, I established a policy that I'll run everything by my internist first -- unless I have experienced the issue before, know for certain it needs a specialist, and already have a specialist available to handle it. If I'm not really certain I need to be seen for it (perhaps it is something that might go away on its own or has an over-the-counter treatment), I will call the clinic triage nurse for advice. That easily saves me several visits a year!

 

A fairly good policy is to never "save" anything for your rheumatologist or other specialists-- unless they are specifically serving as your primary care doctor -- as they usually have their hands full just dealing with an overall review of your medical care. In many areas, follow-up rheumatology visits are only scheduled for 15 minutes, so accumulating a batch of untreated symptoms will thwart medical care by delayed diagnosis and treatment, and probably even have issues left untreated since the rheumatologist may have little or no interest in run-of-the-mill infections, and so forth.

 

You need to get this nipped in the bud. Please see your primary doctor (or even an urgent care center) asap -- or your urologist if you already have one -- and let us know how it goes.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Donna,

 

Among the many medical facts that you may want to keep aware of is your creatinine level (I believe 0.9 is about normal for a person with two kidneys - though I'm not a doctor), as well as your blood pressure. Both of these can have something to do with kidney function - and as you know, with these diseases kidneys are sometimes at risk.

 

I have one of those automatic blood pressure devices that I got at a pharmacy. Good for checking to see if you have a spike in blood pressure (which could mean many things beside possible kidney problems). It is also handy if you take vasodilators for Raynauds (to make sure your blood pressure doesn't go too low, as many doctors are hesitant to prescribe these drugs for fear that the pressure may go too low. They may be more likely to prescribe if you promise to check).

 

A friend's husband had to have a kidney transplant because of long-term high blood pressure (no autoimmune disease). He had never had it checked, and it probably could have easily been traeted if he knew. - So a good thing to keep track of!

 

Craig

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Hi Donna,

 

It sounds very familiar and yes something to bring up to the doctors. Either your primary care provider or rheumatologist can help with that. I'm actually having the same problem right now as it goes, and I'm going to see my primary care physician first, but I will let my rheumatologist know.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Thanks Craig. Funny you should mention it, but I've been taking Nifedical (nifedipine) and took Diovan for a while over the winter. I bought a digital-read blood pressure cuff and found my pressures to be pretty average (around 110/70) once I got off the Diovan. I get lightheaded quite a bit though and feel as though I can't pick my feet up high enough when I walk to keep from stumbling. It can be pretty embarrassing at times.

 

Yes, I've read that kidney disease and pulmonary hypertension are the two biggies to watch out for; I guess that's why the GU tract symptoms were so disturbing.

 

I'll ask my primary care physician about the creatinine when I see her.

 

Take care.

Donna

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Shelley, I think you're right, and I'm happy to report that I got in to see my primary care physician earlier today. She was alarmed, ordered what I assume were kidney function tests and scheduled me for a brain MRI for the stumbling (see post to Craig) and a 24-hour Holter monitor. I thought I would feel petrified but if anything, I feel relieved at the notion that I'll soon know what's going on, which is a lot better than freezing like a deer in the headlights because I'm not sure whether I want to risk embarrassment because it's nothing or I can't decide who to see. primary care physician was actually my first reaction but I've been frustrated by her office personnel who must be having a meltdown because even though I called three times last week to schedule an appointment, the phone just rang and rang. Luckily I persisted.

 

You make a lot of sense, lady! ;)

Donna

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