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At a loss with Doctors actions :(

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Old 07-28-2011, 04:40 PM   #1
Join Date: Jul 2011
Location: Tullahoma Tennessee USA
Posts: 7
Ressamm20 HB User
Unhappy At a loss with Doctors actions :(

I am 29 years old and have been have the following diagnoses:

Confirmed- Crohns, IBS, errosion in stomach, Hyatal Hernia, Depression, PTSD, Diverticula, Degenertive artheritis, Anxiety disorder, Insomnia, endometrosis, Gull Stones

Possibles - Lupus (positive blood test but not yet confirmed) Rhumatoid atheritis

I went to a Rhumy on the 8th (first visit) and he ordered a blood test that came back positive for Lupus. He told me to come back in a year. No followup appointment to discuss the diagnosis and no treatment.

What issues can arise from untreated Lupus? I am on Remicaid for the Crohn's. Is Remicaid a treatment for Lupus?

I am in the process of seeking a different Rhumy for a second opinion (as advised from my regular doctor) but none that take my insurance have openings or are taking new patients. Is there a different specialist that will treat this?

The symptoms that I am having include

Extreme Joint pain
unexplained weight gain
unexplained passing out
swelling in legs (especially at the ankles)
Blood test that came back with high fat
Later blood test that came back with high sugar

Why would the doctor ask me to come back in a year with a positive Lupus test? Is this normal procedure?

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Old 07-31-2011, 06:11 AM   #2
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Location: Charleston, WV, USA
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Re: At a loss with Doctors actions :(

No, that is not at all normal. Initially, you should see the rheumatologist to discuss the type of problems you have. They should evaluate you, do blood work, have you to come back in, and then discuss what is wrong, and offer a treatment for that. To do nothing, and say come back in a year, that is nuts. Find another rheumatologist, even if you have to wait awhile, because this one isn't worth your time. You'd have to wait a year to get back in with this one anyways. Your follow up appts should be at least every 4 to 6 months.

Old 07-31-2011, 09:16 AM   #3
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Re: At a loss with Doctors actions :(

I agree you should not have to wait a year to see your doctor. I usually have followups every 3-4 months and this is for fibromyligia, Chronic Fatigue Syndrium and RA( will be confirmed at next appt.) I know its hard to get in with a new doctor. Sometimes your Primary Care doctor can call and get you in a lot sooner and if not call your doctor up and make and appontiment to be seen sooner. Sometimes I go back sooner than my recquired time, but in the mean time have an appointment set up with the new doctor. Just maybe your current doctor will give you something now.

Best of luck to you.

Old 03-04-2012, 08:45 PM   #4
Join Date: Jul 2011
Location: Tullahoma Tennessee USA
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Ressamm20 HB User
Re: At a loss with Doctors actions :(

sorry I have not posted an update recently. Well I now have a new list of illnessess: Crohnís disease, Irritable Bowel Syndrome, Diverticula, erosion in my stomach, Hiatal hernia, Lupus (not yet "confermed" but I have had 6 positive test in about a year), Osteoarthritis, Rheumatoid Arthritis, PTSD, Anxiety disorder, Depression, Insomnia, DVT, endometriosis, Tendonitis, Excessive Bile (the result of gallbladder removal surgery in September), migraines, and acid reflex disease. To add insult to ingery I have recently had an abnormal pap which indicates a high risk for cervical cancer and positive for HPV (which I believe may be caused by a rape that occured 5 years ago).

I have found a great Rhumy and he is now closely monatoring my lupus tests and the arthritis. He performed xrays which indicated the arthritis in knee hip shoulder elbow and wrist. He says he is pretty sure that I have it in almost all if not all joints to some degree. My levels for the lupus continue to comeback showing high levels which would indicate lupus but not high enough to be concerning as of yet. I guess that basicly means I am boarderline and it can go either way (return to normal levels (questioning this view after having the high levels for over a year) or go even higher into full blown lupus). Apparently the levels I am currently at are because of the Remicade for the Crohn's but have to wait and see before lupus treatments can begin. I wish there was some treatment that can be put into place to prevent full blown lupus. I am getting tired of going to the doctor and finding out I have another illness.

Old 03-05-2012, 10:40 AM   #5
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Re: At a loss with Doctors actions :(

You don't mention how high your ANA titres are/were and what other lupus specific symptoms you have. In any event, although I am just a patient, this might be one of those instances where You are already being treated with a biologic and are being closely watched by the Rheumatologist, and they are treating symptoms and seeing what else, if anything develops. ANA is not positive just in lupus, but in many other autoimmune diseases as well, including RA. The trouble is, many of these conditions mimic one another and even lupus doesn't have to have a positive ANA to be diagnosed. I myself have a relatively high ANA titre but don't have lupus. And each person is different in these AI diseases. Symptom control is paramount for us patients. And in the same breath, I want to point out that each patient has their own unique set of symptoms for each AI disease. Plus they wax and wane as a part of the disease course in some of these conditions. I can see that you have an awful lot on your plate to deal with and need to focus your strength on what you do have. If you are happy with your rheumatologist, let him do the watching for now. I almost forgot to add that many of these biologic drugs are used to treat multiple AI conditions, although some pop up more frequently with certain conditions than others, I have seen virtually all of them prescribed for each of the various more common AI diseases. I also wanted to say that an abnormal PAP smear isn't automatically cancer or even future cancer. A condition to be treated to be sure, if necessary, but not a guarantee for cancer. Nor even is HPV. Sometimes I think Dr's (and maybe us patients, too, lol I know that I have) get so caught up in warning us about the worst case scenarios that they forget we get very scared with the doom and gloom and so too expect all the worst. For many, many patients, symptoms can be treated so much better than they have been in the past, so that we can see some light rather than just that gloom. Take care and I hope you start feeling better soon!

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