So Confused

Hello. I'm a 25 yr old female and having trouble figuring out what in the world is going on with me. I have had trouble with swelling joints but no damage shows up on X-rays, I frequently feel joint pain and my nerves feel like they're vibrating at night (only way I can describe it other than "tingly"). I'm exhausted and barely make it past 3pm every day without falling asleep. I also have been getting these awful headaches that are not migraines but feel like someone is squeezing my head and it pulses. It's horrible. I'm also experiencing chest pains and sometimes feel like I'm not getting enough air. I have an itchy rash all over my scalp but it isn't crusty or thick..Basically, I'm a mess.

I took all of this to my primary doctor, and she ran every test she could think of, including blood work, CT scans of my chest, X-rays of my swollen toes, a stress test, etc. Everything came back negative except my ANA. (This was in April). It was 1:80 Homogeneous and 1:160 Nucleolar. She then referred me to a Rheumatologist who ran another million blood tests and took more X-rays in August (different joints were swollen this time) and mentioned she thought I might have some type of arthritis. All of these tests were normal except, again, my ANA. This time it's 1:640 Homogeneous and 1:640 Speckled. She told me to go back to my Primary to discuss it further and that she didn't see any reason to believe it's Lupus or Arthritis.

I am feeling so frustrated and a bit crazy, to be honest. I feel like I have these symptoms all the time, but I'm worried it's all in my head since nothing is showing up, you know? I have so much going on but all the tests coming back negative has just further upset me. I'm just not sure where to go from here. Do I get a second opinion or do I just sound like a Hypochondriac at this point?

3 Replies

oldestnewest
  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

    You are not a hypochondriac. Indeed, many patients report they are made to feel as if "it's all in the mind.

    SLE is difficult to diagnose because there isn't a single blood test to confirm a diagnosis. Your ANA test is also non-specific (I have written about ANA tests here and at the LuPUS Message Board (see below).

    SLE can take time to diagnose, but even if the diagnosis takes time, there is no reason for your symptoms not to be treated, rather than dismissed. For example, your headaches. Did they test for the antiphospholipid antibody (Hughes) syndrome? Moreover, blood tests can and do change. One set of blood tests is not sufficient. Blood tests can and do change over time. Moreover, there are sero-negative lupus patients. A lupus specialist is needed because ordinary rheumatologists are unaware of sero-negative patients.

    I would recommend the following:

    1. Note down, with dates, ALL childhood illnesses, no matter how irrelevant you think, until present. Include depression, anxiety and any phobias. Include allergies and whether you were diagnoses with glandular fever etc

    2. Note down ALL your current symptoms, with dates.

    This really does help the clinician.

    If you did not like your rheumatologist (there are many who have never seen or treated a patient with SLE), ask to see a lupus specialist.

    I am curious as to why you think you may have SLE. Is there a history of autoimmunity in your family (eg Type 1 diabetes, MS, rheumatoid arthritis, autoimmune thyroid conditions etc).

    There are many rashes involved in lupus, but you need to see a dermatologist as rashes tend to look like other rashes! A biopsy may be required. It is unusual for patients with SLE to have actual damage to the joints, as is the case in rheumatoid arthritis. Muscles, ligaments can be involved. You mentioned you have had a chest xray which did not show anything? Pleurisy is common in SLE but this would be picked up via the x-ray if it is "wet" pleurisy. There is also a condition called "dry pleurisy" ie without pleural effusion, but inflammation of the lining of the lungs. There is also a condition called "Lupus Lung" which is benign, but can be diagnosed by a lung specialist and very specific lung tests, which are not normally given UNLESS the pulmonary specialist is actively looking for it. It's sometimes called "Shrinking lung" but it is not serious but does give symptoms of not being able to get enough oxygen, partly because the diaphragm is higher than otherwise.

    Please note: I am NOT making any medical diagnosis. Only a doctor can diagnose you. I hope all your symptoms can be resolved without a diagnosis of lupus. Even if you do have lupus, a good rheumatologist, an expert in lupus, will be able to help you. In the last 50 years, both diagnosis and treatment have improved to such an extent that most people lead a normal life, marry, have children and have a normal life span. There is every good reason to be helpful.

    You may be interested in 2 posts on the LuPUS Message Board:

    The first is written by Dr Graham RV Hughes, who is an internationally respected lupus specialist who was at the Lupus Clinic at St Thomas' Hospital, London:

    "Is it lupus? The St Thomas' Hospital 'Alternative Criteria'."

    lupus-support.org/LuPUSMB/i...

    The second is a video from a nurse explaining about SLE:

    At the Rheumatology Nurses Society Annual Conference, Monica Richey, MSN, ANP-BC/GNP, spoke about lupus and antiphospholipid syndrome. She it is important that rheumatology health care providers understand there is a “perfect storm” that develops this disease. Richey said there are currently more than 126 known genes involved in the development of lupus, in addition to the role that sex hormones and the environment, such as emotional stress, pregnancy and drugs, have in the development of lupus.

    lupus-support.org/LuPUSMB/i...

    We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    I look forward to talking with you more!

    Sometimes we need to talk to people who understand and who are not family or friends.

    With good wishes!

    Ros

    Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

  • Thank you for all of this information! This is much more than my rheumatologist gave me, so it helps.

    In regards to my headaches, my Primary care doctor ordered an MRI scan but I haven't yet had the time/money to do it. I did mention the headaches to the Rheumatologist and she noted it, but it didn't seem high up there on her list.

    I wouldn't be surprised if it was SLE given that my grandmother has Lupus and arthritis.

    As for my chest pains/ breathing troubles, no, they didn't find anything out of the ordinary. They were looking for a pulmonary embolism (because of the sharp pains) but I feel like they would have mentioned anything unusual if they saw it. I've seen a Pulmonary doctor already as well who thinks my tiredness may be sleep apnea, but I rather doubt it. I don't snore or anything like that. I did a home sleep study and I'm awaiting results still.

    I am currently still on the anti-inflammatories the Rheumatologist gave me for the swelling, and she initially wanted me to come back and do a second round of tests next month but if she's not sure she's seeing anything, I'm assuming she no longer wants me to do that. I will start a symptom journal and start writing everything down. At least it's a start.

  • I hope the anti-inflammatories will help you in time. I gather you are in the US, which has a different system of healthcare.

    I think it is important to tell your doctor that there is a family history. SLE is partly genetic, plus many other factors. There are over 120 genes associated with lupus. Unless a doctor is actively looking for lupus, it can be missed.

    The only other advice is to contact the Lupus Foundation of America and look for your local chapter where you can explain your situation and hopefully they may offer advice to you:

    lupus.org/

    The LuPus Message Board is full of information, but you can also talk to other people.

    With good wishes,

    Ros

You may also like...