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Not sure if I should ask to see a specialist,

Discussion in 'Not Diagnosed Yet?' started by Dutchiekins, Nov 22, 2020.

  1. Dutchiekins

    Dutchiekins New Member

    Hi all, I am new. I hope I'm posting in the correct place.
    I've been having trouble for many years with symptoms that come and go and my Doctors always slough them off to anxiety or stress. I need the opinion of someone who has a real diagnosis and experience with Lupus.
    My mother had Systemic Lupus and Heart disease, she passed away of Lung Cancer 5 years ago. She often complained of symptoms but I was maybe too young and self involved to really hear her out.
    I know that she never had a butterfly rash, she had reynod's (spelling?) muscle and joint pains, recurring fatigues, anxiety and eventually Heart disease. She was tested for many things for many years until finally she got a positive test for Lupus. I am not totally sure which test. She was treated for years and she had the occasional flare ups but she did ok until she was diagnosed with cancer.

    I have dealt with various symptoms including two bouts of alopecia hair loss when I was in my 20's, I am very sun sensitive, I get sunburns and also sun rashes and sun stroke really easily. I have never had a butterfly rash but for about 10 years I've been getting recurrent mouth ulcers. I get them every couple months, my entire mouth is filled with pain, and I get geographic tongue and swelling, I also get angular chelitis and cracked lips.
    I have been to every dentist and dr and they all want to tell me its just stress. I recently started getting a red spotty rash inside the cheeks of my mouth with the mouth ulcers, I get headaches and severe fatigue whenever I have them. I have to take naps and pain medication, I feel foggy and out of it. I was told by a mouth specialist that Lupus sores are usually painless, so they "ruled it out."
    I've also had a colonoscopy which ruled out any other ailments like chrons, celiac or herpes.
    I've recently started getting an occasional sore inside my nose.

    My second huge symptom is that when I was pregnant with my first I developed Pvc's and heart palpitations. I had every manner of test and they were determined to be benign. The Dr. told me that they would go away. But they never did. Recently they have started to become worse and sometimes feel like a racing for a long period of time. I feel like I get several pvc's in a row. I sometimes get diziness and short of breath.
    I've had some lung symptoms as well, like a pain and scratching feeling in my chest after one of my pregnancies. The Dr. I was seeing at that time knew that I was experiencing post partum anxiety so he told me that I was imagining it. But I've had it come and go in the same place with occasional pain, and like a crunching scratching feeling when I breathe.

    Other smaller symptoms might be that I feel pain in my hands and joints when I'm cold. Ive had the occasional allergic reactions like hives which never happen again. And just random fatigue which my dr.s attribute to anxiety. I had gestational diabetes in all my pregnancies. And I have dry eyes and sensitivity.

    The truth is I'm fairly fit, I'm not that old. I just finished having my babies. But I am at least 6 times per year completely incapacitated by fatigue headache, sores and pains that I have no idea why?
    Should I be pushing for a lupus diagnosis? Should I be asking my Dr's to send me to a specialist? I have asked for the basic lupus bloodwork several times and each time they come back normal. I'm so confused and as I type this I am having a bout and I just get so upset worrying that it something serious that I should be figuring out. My mom is not here so I cannot talk to her and sometimes that just gets to me too.
    If anyone could give me any advise I would be greatly appreciative.

    -Missing Mom.
  2. lazylegs

    lazylegs Moderator

    Welcome Dutchiekins,

    Sorry to hear your mother lost her battle with cancer.

    Given your mom's history of Lupus and your symptoms I think seeing a specialist would be appropriate. There are other tests not usually given by your gp that might help find out what is going on. Tests the rheumatologist would be interested in are on the main site

    During the testing you have had did any of the doctors check your thyroid? It is not uncommon after a pregnancy for the thyroid to get out of whack. Mine went overactive and I had similar symptoms.

    Unfortunately many doctors don't realize Lupus isn't the same in everyone. The painful mouth sores would be one of those instances. Most people do not experience pain but I do and so do several others I know. Frequent salt water rinses help with mine.

    Keep pushing for an answer. Yes it could be stress but stress can be a precursor to problems in the body.

    Take care,
  3. x_claire_x

    x_claire_x Moderator

    Hi.... just to echo Lazyleg's definitely need to go and see a Rheumatologist with experience in autoimmune conditions.

    The Raynauds can often be indicative of Mixed Connective Disease and can be a mixture of a few of them.

    It would be a good idea to start a daily diary, noting what you are doing each day, pain grading the days, noting the weather and your level of activity..... you would need to note examples ie can't reach up to get something down from the cupboard. can't wash my hair with arms overhead, too tired to socialise etc etc. Pop down anything physical like the ulcers and swellings/headaches/muscle joint pain/rashes etc. Take photos of as much as you can This will give both you and any Drs something to look back on. a history. It is very hard to remember it all when you see a Dr and to be honest, if you have been suffering for a while, we tend to normalise things... I was shocked when I realised that I couldn't actually bend my wrist to feed myself...and that was the example my husband made to the Rheumy... I had just said...yeah, I am okish !!! Ridiculous, but I was so used to not being able to change gear very well..or not holding a cup/glass comfortably. Also any appointments go without makeup and nail polish etc and don't smile too broadly...we tend to understate things.

    I am sorry to hear about your mum...she definitely would want you to push forward and to look after your health.....let us know how you get wishes.........Claire
    wolf1 likes this.
  4. Ann2

    Ann2 Registered

    You have been given some good advice by the Mods!. Just want to wish you well in getting a diagnosis. Definitely ask to see a specialist.
  5. sagehen

    sagehen Junior Member

    I am very sorry for your loss of your mom. I agree with the above posts. I would push to see a Rheumatologist. I can tell you that my lupus nose/mouth sores are very painful. Some doctors cannot seem to think outside the box. They think we need to fit the stereo typical lupus case they have in their minds. The truth is, we are all very different with different. If you believe in your health symptoms are Lupus related, then be your own best advocate. Write down and keep a log of your symptoms. If you have rashes take photos of them to take to your doctor.

    I went at least 10 years with no help, because my family doctor could not think outside the box. My hope for you is that you will not be like me. Push, and push some more for help. Push to see a specialist. If you are married, or have a supportive partner, take them with you to your doctor appointment to help validate what you tell your doctor. I did these things to finally get help. Mainly, do not give up. Don't let them brush you off, by telling you stress is the cause of your many symptoms. I was told many times, that I was only depressed, not sick. Yes. I was depressed, because I was sick and not getting help. I was not just depressed. It is not all in our heads.

    I will have you in my thoughts. Hang in there!
    x_claire_x likes this.
  6. countrylass

    countrylass Registered

    So sorry loss your dear mam,hugs prayers

    Sounds like myself I have overlap lupus Raymond's fibromyalgia sero negative rheumatoid arthritis.

    Definitely keep pushing its not textbook lupus everyone varies.
    Take care lots advice above nice meet you

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