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Katie4593 01-09-2013 09:44 PM

rheumatologist for autoimmune work up? strange symptoms
I'm very confused as doctor's are by myself and my symptoms, I'm not sure if anyone has been in a similar situation or has any advice. I have a few different symptoms but one of the main concerns with me is at 19 years old, 120 pounds, I had a blood pressure of 170/100 before medication, I am now on a beta blocker which they've increased my dosage a few times and my blood pressure hangs around 130/85 now. I got a ct scan angiography of my kidneys to rule out renal artery stenosis, this was found unremarkable, but according to a doctor today they told me my kidneys could be have been viewed as normal but could be having a spasm. Since my kidneys were found unremarkable by the ct scan my doctor referred me to a cardiologist who I saw yesterday, he unfortunately increased my dosage, and made an appointment for an echocardiogram for next week. Aside from the high blood pressure ever since I had Mono, which was about 2 and a half years ago I developed strange outbreaks of rashes on my hands/arms. I have other symptoms such as fatigue, so they believed it could be lupus, but I tested negative. Apparently you can get a false negative, I don't know if this occurred with anyone else. So after I saw a doctor today they wrote me a referral to see a rheumatologist for an autoimmune work up. The other strange thing with me is persistent enlarged glands on my neck, under arms, & groin. I have this one swollen gland, which I believe is called the submandibular gland which is more firm. The doctor I saw today suggested I see my primary doctor & mention Hodgkin's Lymphoma as this is a symptom & is a more common cancer in my age group......I appreciate any advice from anyone on what this could be or advice on what steps to take next.

ladybud 01-10-2013 03:03 AM

Re: rheumatologist for autoimmune work up? strange symptoms
Your symptoms could certainly fit with lupus, as lupus causes rashes, high blood pressure, especially if there is any kidney involvement, swollen lymph nodes and marked fatigue. It is common to have a negative test result for lupus, particularly early in the course. So there are a number of ways to check this out. One is that there are numerous other antibodies and inflammatory markers, etc that can be tested in the blood that may not be definitve, but can provide clues. The rash can be biopsied and immunofluorescent studies done, which will sometimes yield a diagnosis. Urine should be examined for blood, protein and casts, for possible lupus kidney involvement. A complete blood count, and chemistry panel should also be done to look for anemia, low white cells, low platelets, liver and kidney function. Lastly, one of the enlarged nodes could be biopsied. It is important also to repeat the ANA test periodically, as if it is lupus it most likely will eventually turn positive, although that can take months or even years in some people. If your rash is brought on by sun exposure, that is characteristic of a lupus rash. So the diagnostic process can take some time, and some Drs will go ahead and treat a person if the clinical suspicion is high, even without a definite diagnosis. I hope you get answers soon and feel better. The beta blockers for the high blood pressure may exaccerbate the fatigue, and it would be good to consider other medications or a combo of meds instead of just raising the dose repeatedly. I would discuss this with your Dr who is treating your high blood pressure. ACE inhibitors have a protective effect on the kidneys and are very effective for lowering BP. They can be used in combo with beta blockers, so the BB dose can be kept down. Glad you found the boards, and hope your workup goes smoothly. Please keep us posted on your progress.

VeeJ 01-11-2013 08:01 AM

Re: rheumatologist for autoimmune work up? strange symptoms
Hi, Katie. In your shoes, I'd follow thru on *all* possibilities raised so far by the various doctors who have seen you. First, I'd talk to my primary ASAP, to convey that the possibility of Hodgkin's was raised, as you'd want that ruled in or out, quickly.

For the possibility of lupus, yes, I'd definitely see a rheumatologist. BTW, there actually isn't a single test for lupus, there are multiple tests. A dx of the *systemic* form is usually (not always) based on meeting 4 or more of 11criteria. You could check out the Lupus Board to read those criteria (and certainly you could post there too, if you want to).

The Lupus Board also has info on various lupus-specific skin rashes that might be interesting. Ladybug already raised the question of photosensitivity, but I'm also wondering, did your rashes start before or after you started the BP medication? I ask that because some meds can simply cause rashes, or cause rashes after sun exposure. But also there are meds that can induce a *milder* form of lupus in susceptible people, called Drug-Induced Lupus Erythematosus (DILE). A rheumatologist should question you about the sequence of your symptoms, and his/her workup should include all appropriate tests for the various forms of lupus, AND other autoimmunes capable of producing similar symptoms, too.

And of course I'd do the echocardiogram....

I'd probably ask more questions about your renal CT scan results being "normal" but showing signs of "spasms". What causes "kidney spasms"? (For example, kidney stones can cause misery---I've had them---but if you had stones, should the CT have shown them?) Other than stones, what other causes of "spasms" are there?

I hope you stay in touch as you work thru all this. Someone is always around for you to talk with. Hang tough! With warm wishes, Vee

ladybud 01-11-2013 11:34 AM

Re: rheumatologist for autoimmune work up? strange symptoms
I agree with all Vee said above. Your PCP could refer you to an oncologist for ruling out the lymphoma possibility, and a rheum for the autoimmune possibilities. I agree the mention of kidney "spasms" is weird, although I guess there could be spasms in the renal arteries, which could contribute to high blood pressure. It is interesting that the high BP started with mono. Since lymphoma is more serious, that probably needs to be looked at first, and hopefully crossed off the list.

PamS1970 03-21-2013 10:23 AM

Re: rheumatologist for autoimmune work up? strange symptoms
Have you been checked for sleep apnea? That can cause high blood pressure, especially one that is hard to control. It can also cause fatigue. You do sound like you have autoimmune issues as well, but I would talk to your dr's about a sleep study. I have an autoimmune condition, but I also have sleep apnea and using a cpap machine has helped me tremendously. I stopped breathing when I was sleeping 60 times an hour!

Just a thought...

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