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An_206336 posted:
44 year old female. Symptoms have been happening for 8 years. Started with sharp head pain. 2003 Neuro did MRI and ANA. MRI showed small vessel damage and 2 lesions. ANA was positive for systemic auto-immune. Then started having sever fatigue and diarrhea. Doctor first thought lupus but test did not show lupus. So, a diagnosis of fibro was made without any further testing. Recently ANA test was said to be normal ( did not give titer) have rash ( in patches) on forearm, underarm and neck. Fingers swell and turn red. Skin, eyes are itchy. Mouth and eyes are dry. Severely tired all the time. Still get migraines. Shoulder, hip pain. muscles get soar as though I had worked out. Eye doctor diagnosed hypertensive retinopathy due to high blood. Blood work shows vitamin d deficiency, high cholesterol. On PCP #4. Auntie ( dad's sister) has scleroderma, father ( now passed of lung cancer) had rhuematoid arthritis........whew. Okay, what is recommended that I do so that I don't have doctor #5 or give up. Unfortunately, my insurance requires a referral to go to a rheumie or I would just go straight to a specialist. The problem is convincing a PCP that I need a specialist. My last doctor had to be begged for a referral after she saw actual x-rays of osteoarthritis in my hip. She said that since it wasn't rheumatoid arthritis I didn't need a specialist. Finally, after 3 calls she referred me to one of her partners in the same building. I didn't go because she made me feel like I would be wasting my time......who knows what conversation she had with him.
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squirmy1963 responded:
Don't give up. Most of us go thru this with PCP's. You certainly sound like a rheumatologist referral is needed. I ended up going straight to a specialist and just paid the dang bill. But you might get dropped or premiums will go up once you get a diagnosis. So be aware of that. Some people get treated for it, without putting the diagnosis on paper for this reason. Family history and your signs and symptoms should get you a referral. Call a Rheumatologist and ask them for a good PCP that has been good about referring patients. That shouldn't cost you anything and might get you to the right PCP.
 
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warriorezz replied to squirmy1963's response:
Thank you. I actually did get a referral from the rheumie for a PCP that works at the same hospital. The Rhuemie came recommended from the Scleroderma Foundation. I wonder with the changes going on with healthcare now if it would change the outcome once diagnosed. At this point though, I would be relieved to just get the diagnosis......Ive been feeling like maybe Im going bonkers! But, the rash has really made me know that something is going on. Thanks again
 
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petoh69 replied to warriorezz's response:
Its been ten years for me to no avail Im ready to just end it all .I was never someone who went to the doctor even for broken bones now people are calling me a hypocondriac.I've been in bed for 3 days now and am even having trouble doing this.I would certainly be interested to hear how you make out with the rhumie.sorry to vent .Have no where else to turn
 
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squirmy1963 replied to warriorezz's response:
your not bonkers, your sick. sounds like you are on the right track, it can be a relief to put a name to what's wrong. And have a target other than yourself to be mad at. good luck to you, and keep posting.
 
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squirmy1963 replied to petoh69's response:
This is temporary. Call a doctor or go to emergency now. Don't end it all. I've been there, it does get better. Keep us posted.
 
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Andie_WebMD_Staff replied to petoh69's response:
Hi petoh69,

I am so sorry you are experiencing such pain and have found no relief or support yet. The Lupus Exchange is a wonderful group of members that are experiencing many of the same conditions and are very supportive. I hope you will find some suggestions here that will help you.

I see that you posted a new discussion now that explains more of your situation. We hope today is a better day for you, but should you or anyone feel this discouraged or depressed again, please call a crisis line right away and let them help you.

The Hopeline Network is available at 1-800-784-2433 or find other crisis resource links here .

 
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allie_bf responded:
It sounds (to me, anyway) more like Sjogren's than lupus, but with a previous positive ANA, joint pain and swelling, and a positive family history, you certainly have a good "case" for a rheumatology consult. I have two suggestions. First, it would be a good start to go to the partner since even if you get the rheumatology consult, you will still need a primary care doctor. You might even get lucky and get your referral that way. At least you will look like you are trying to work with them. Second, one way to get around the gatekeeper problem is to actually go around them: i.e. go see the rheumatologist (at your own expense,) get his/her opinion on whether you need a rheumatology referral, and if he/she concurs, ask for a letter to be written to your PCP (the specialist's letter will count for a lot more than either of our opinions.) You might even get that first visit covered. but even if you don't, it's worth if for the followup care.
 
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warriorezz replied to allie_bf's response:
Thanks for the suggestion. I actually thought about doing that. I just went ahead and got a new PCP. He is part of the same hospital that the recommended rheumie is part of. I just completed the basic blood count bloodwork. I am trying to give the new PCP a chance and see if he is a good fit for me. If not, then I will see about seeing the rheumie and just pay out of pocket. My auntie has scleroderma but also has Sjogren's. I have all her symptoms just about.....she has gerd, high blood pressure, dry eyes and mouth, migraines, digestive issues, reynauds, insomnia, fibromyalia and arthritis. I just wonder how I have all the same issues and the doctor's aren't concerned.
 
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HG1948 replied to petoh69's response:
Petoh,

I went 13 years with inappropriate treatment, severe pain, and diagnosis that included, chronic fatigue immune dysfunction, degenerative joint disease, spinal stenosis, high blood pressure, and fibromyalgia.

My rheumy herself went three months without believing that I had lupus, but she believed that I had an autoimmune dysfunction. ( I was referred to my rheumatologist, by my first pain management physician, because of abnormal lab results.)

I understand the frustration, and the indignity of "hints" that I was a hypochondriac. I was even hospitalized once from days with chronic diarrhea and vomiting, joint pain, fever, and a heart monitor. My PCP simply shrugged his shoulders, when my frightened husband asked him if he had any "new" ideas about what was wrong.

What do I think that this has to do with you? I think I've been in a situation similar to yours. What I want to know is:

Question #1.)

Do you have thoughts about people feeling sad and sorry they treated you badly, if you died in the near future? I'm not making light of this feeling.

Question #2.)

Or, do you have thoughts of "revisiting" every one of those same people who believed that you were a hypochondriac, and you are feeling good and looking great? I did this last weekend. Success really is the best revenge!!!!!!

If you chose #1. I think that you need to call the phone number for Crises Intervention that Andie gave you. You are severely depressed, and that happens very easily when you suffer from a chronic illness. I believe you would benefit by talking this through with someone. (I worked with several hundred families over the years, as a psychiatric and medical social worker.

Did you know that the majority of friends and families are very angry with the person who takes his/her own life!)

If you chose #2. You've had at least one or more experiences in your life with reaping the rewards of NOT GIVING UP on your ability to change your own situation and to live the life you want to live.

Your having reached out to us, which makes me think that you really want someone to listen to you. Are you hurting desperately, physically and emotionally, from being stuck in the same situation for 10 years? Well, you've certainly come to the right bunch of people here.

You might also need someone who can help you problem-solve to figure out a different strategy to use in order to secure the appropriate medical attention that you've been seeking.

Don't feel like you can't come here and say how badly or sad and frustrated you feel about your life. I've done that myself. However, saying that you are "ready to just end it all", is a different matter.

Keep trying and don't give up.

HG
 
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warriorezz replied to squirmy1963's response:
Just thought I would give you an update. Finally got a PCP who is with the same hospital that the recommended rheumie works for. Had my first appointment and the doctor didnt even seem welcoming. I told him all my symptoms and family history. He ordered the regular blood work and that has been it. No call back on the CBC but no ANA requested. He treated everything seperately. High blood pressure meds, over-the counter meds for Gerd, some cream stuff for the rash and thats it. I am done with doctors. They arent going to help me. Not until I am bleeding to death or passed out or not breathing. They don't care....they just want you to pay the bill. I am very, very, very frustrated. On one hand I am told not to overload the doctor with all the symptoms I am having so they don't think I am faking...but then I am miserable and need relief and answers.....validity. Haven't gotten any of those yet.
 
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HG1948 replied to warriorezz's response:
Warriorezz,

Has it been 10 to 14 days after your lab work was done. I've discovered that some of my doctor's offices require almost a week, after they've received the lab results back before I hear from anyone. The doctor has to examine the lab results, then write out the instructions to his/her staff to contact me. If I havn't heard anything after two weeks, I usually feel free to call the doctor's office and request a return call about my lab results.

I don't usually hear from the doctor's office if my lab results are within "normal" limits.

I don't know how much experience you've had with doctor's during the last 5-7 years, but ever one of my doctor's is seeing more patients within the same number of hours. (My rheumy is not working non-stop right through what used to be their lunch hour). What I am trying to say is I believe your expectations about the doctor seeming to be welcoming might be unrealistic, if you expect anything more than a "Hello, I'm Dr.______, what brought you here today?" That's been about it for me with new doctor's.

I am not minimizing your feeling frustrated. I can only say "I've been right where you are right now" . As my lupus has gradually caused new medical disorders, I now have 7 different doctor's all taking care of "different parts of me....my kidneys, brain, spine, nervous system,......" I experience some form of "doctor's office drama" every week or so. I've just developed a higher tolerance for it all then you apparently have. My advise is that you just continue being assertive and your own advocate!

Call your doctor's office and simply schedule an appointment. When the doctor's staff ask you, "why do you need to see the doctor" simply respond "I am still very ill".

Take with you, to that appointment, and every appointment afterward, a list of all your symptoms. Also, take a list of the medications you are taking that have been prescribed by all of your doctors. I simply hand my doctor's ME who weighs me and takes my blood pressure before I see the doctor, my prescription list. I usually read my list of questions beginning with the most serious ones first. I take the opportunity to present all of my questions before I leave my appointment.

It sounded like your doctor did what is usual and customary with re. to treating everything seperately. The fact that you didn't get a call on the CBC generally means that are no abnormalities.

Only you know how seriously ill you actually are! It is going to be left up to you to give your doctor a clear picture of your condition.
Remember lupus is not diagnosed by any one lab test. There is no such thing as a lab test for lupus. Your symptoms, and your physical condition, that your doctor can observe with his own eyes are equally important. Your medical history is also an important component in diagnosing your condition.

The advise you received with re. to not going overboard with telling all of your symptoms...is very bad advise. The advise I gave you is based upon the actions I took what worked for me.

Don't give up. Lupus can only get worse with no medical treatment at all.

Keep us updated.

HG


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