Over the past 15 years, I have had so much trouble with aching joints and muscles and tiredness that I have had several series of blood tests for Lupus. Fifteen years ago I have been diagnosed with severe fibromyalgia but there is a question mark over whether I have lupus as well. I am sick of going to the doctors and not being taken seriously.
In spite of getting repeated highly suspect blood results, I am still waiting for a diagnosis. Two years ago I went to a local rheumatologist to get a second opinion. He told me he thought I may have it and asked what my original rheumatologist Dr H thought. I told him she said she wasn't sure and therefore diagnosed me with non-specific connective tissue disorder.
Straight away, he announced that he too thought I didn't have it: after all he had gone to school with Dr H and she was an honours student- if she wouldn't call it Lupus, he wouldn't. I left totally frustrated! And not helped at all. It was an expensive and futile visit.
In spite of getting repeated highly suspect blood results, I am still waiting for a diagnosis. Two years ago I went to a local rheumatologist to get a second opinion. He told me he thought I may have it and asked what my original rheumatologist Dr H thought. I told him she said she wasn't sure and therefore diagnosed me with non-specific connective tissue disorder.
Straight away, he announced that he too thought I didn't have it: after all he had gone to school with Dr H and she was an honours student- if she wouldn't call it Lupus, he wouldn't. I left totally frustrated! And not helped at all. It was an expensive and futile visit.
For anyone who has a diagnosis of lupus or who cares to read further, here are the reasons I believe I have it. Posts are written by myself on But You Don't Look Sick Board.........
Hi. I have been to a rheumatologist and was told that I have Unspecified Connective Tissue Disease and she is not ruling out lupus.
My symptoms are:
extreme fatigue
fibromyalgia
dry eyes and skin
+ANA- has tripled in 12 months
constantly elevated ESR (mild)
diabetes 2
hypothyroidism
cardiovascular disease- 3 stents inserted in Oct this year thrombosed radial artery after angiogram
antiphospholipid syndrome
polymyalgia rheumatica
worsening fatigue
sunburnt look across my nose and cheeks
maddeningly itchy raised rash on my back and spreading out to shoulders, and now going up nape of neck and into my scalp- scalp is bleeding from scratching it
severe muscular pains and sore finger joints
swollen glands at back of neck and behind ears
difficulty focusing on things
one lot of eye styes after the other
Mesenteric panniculitis
Dermagraphia
Grape like blood filled sores in back of roof of mouth that burst and ulcerate- no injury, just happen
Painful fingers- one cant extend straight- wrists and neck and toes ache but not positive for RA
Butterfly shaped MILD transient rash like sunburn after being outside or tired
Extreme fatigue like fibro flare but lasting a month now with mesenteric panniculitis symptoms again
I am not anaemic though. Does this mean I don't have lupus? does it sound like I do have it? I dont want the disease per se, but maybe if I finally got a diagnosis, they could treat it.
Last year I had a return visit to Dr H and she scarcely looked at the results but seemed obsessed with the fact that I have had 3 stents put in my heart and am obese. She said she would put me on Plaquinel if I continued to have pain. I do not intend to consult her again. She diagnosed my identical twin as just fibro, and she now has full blown lupus SLE. My cousin has it also and one cousin has a granddaughter with it... so there is a very strong family history.
Fast forward to today and nothing has changed except I am losing my hair at a rapid rate. My left leg is visibly swollen and painful. My ANA and ESR are even more elevated. I have antiphosphilipid syndrome but most other tests seem OK. Though one with a River Viper serum (?) was abnormal.
The ANA+ was 1:80 in 2005 then 1:323 in 2015 and this latest one last month is 1:600 . There seems to be a lot of inflammation but he doesn't know what is inflamed. Tomorrow night I am going to see my doctor and Chris is coming with me. There are now issues with my bleeding too easily. Blood thinners are too potent for me I think. I am a mass of bruises! I cry with joint and muscle pain.
I know lupus is a hard one to call but I want an answer and am requesting more tests and a new rheumatologist. This time I won't tell him about Dr H! Any thoughts and prayers are always most welcome. I just want to be without hurting!
© Glenys Robyn Hicks
Bless the LORD, O my soul, and forget not all his benefits: who forgiveth all thine iniquities; who healeth all thy diseases; Psalm 103:2-3
those mouth sores make it sound like lupus to me!!!
ReplyDeleteI am still chasing my tail! The doctor was not interested in discussing lupus with me last night! It is so frustrating! It's like they get a mind set against Lupus and won't even consider it! In spite of the many typical symptoms! Blessings!
ReplyDeletei looked back over the websites i keep and this screams lupus!!! please let me know what you find out. i am praying.
ReplyDeletetruthfully- i am doubting my own lupus diagnosis.
Thanks so much, Tami. I am still trying to get someone to *listen*
ReplyDeleteThanks for praying for me: I will pray for you too! Blessings!
Oh Glenys! What a torment you are going through. I will pray for you, too. I wonder why doctors are shying away from a lupus diagnosis. Whether it is lupus or not, it sounds like you need a treatment plan.
ReplyDeleteNext time you go to a doctor, it might help to have a nicely typed list of your top concerns in bullet format, in order of your perceived importance, no longer than one page long. Write "Doctor X's Copy" on top and bring a copy for yourself. Bring Chris along again, too. Hand the page to the doctor. I've never had a specialist dismiss this and most liked it. They ask if they can keep it for their files. It saves them time with making their own notes.
Make it as concise as possible and leave space for notes where needed. Take out your pencil as you give the doctor his/her copy so you can take your own notes.
Write your symptoms only. Never suggest a diagnosis. They like to come to that themselves. If asked what Dr. Y said, just sweetly say that you would prefer to have Dr. X's unbiased opinion before you disclose that information.
I have been told by a few doctors that they have never had a patient do this. They seem to like it. I always say, at the beginning, "I don't know if you'll have time to go over this whole list (if it's more than about 3 points) so I've put my concerns in order of importance." So far (and, thankfully, I seem to be finished with the diagnostic run-around now!) every doctor has gone over every point with me.
This really helps, too, with keeping your own records and it keeps you focused when your symptoms are so over-whelming. And yours certainly are!
God bless you, sweet Glenys. I'm so sorry that you are going through such a fiery trial.
I forgot to add that I always take along a second "report" which includes a timeline of diagnoses and surgeries, which includes the doctor's names, hospital, etc.
ReplyDeleteI also have a list of the medications I take.
This list has been so handy. I just update it when needed and hand the doctor a copy for his/her files if asked. In some offices, I've had to fill out forms and it is so convenient to have all the information at hand and not have to rely on my memory.
Sabine, that is an excellent idea! But first I have to summon up the courage to ask for yet another referral to a rheumatologist! Sometimes when I mention the fibro, I get the distinct impression that my doctor does not believe it exists- nothing ever said but body language says it all. Usually he is a top doctor but in fibro/lupus matters he seems to have a closed mind. (Even though I have had a diagnosis of fibro and a "half" diagnosis of lupus) It is maddening! But I will do that list and time line. Thanks for suggesting it. Blessings and love in Christ, Glenys
ReplyDeleteAck, the fibro... don't even mention that. Just tell your symptoms. Fibromyalgia is just a description of symptoms that many people get *along with* another disease or disorder. As you know, some doctors don't "believe" in it so you have to play their game. Just say you have a lot of pain and crushing fatigue. Let each doctor "diagnose" you, individually, whether it be fibro (sometimes the easy way out for them) or whether they choose to pursue it further (which is what your goal is).
ReplyDeleteIn any case, you have a lot more going on than the fibro. Many of us with fibro have another disease or disorder underlying it. That is what you want to treat, since there isn't much they can do for fibromyalgia.
If you stress the fibromyalgia, some doctors will immediately dismiss you mentally, thinking it's all in your head. In your case the fibromyalgia diagnosis seems to be a handicap to you so try to downplay it as much as possible. You only have "symptoms consistent with fibromyalgia, such as pain and fatigue" but you know there is something more going on.
Also, never ever mention that you think you might have lupus! I have a nice relationship with my GP and he told me that they call patients like me "lupus wannabes"! Isn't that terrible? I told him I did not want to have lupus! I just wanted a proper diagnosis and appropriate treatment. (I had a battery of tests which proved that I *don't* have an autoimmune disorder, to the total surprise of my GP! I have the symptoms but the blood and urine tests are all normal.)
I hope you can find a doctor who wants to be your "hero" and look further to diagnose and treat you. If you need help with editing or formatting a list, let me know and we can do it over e-mail. I have saved mine (somewhere on a little thingy which plugs into my computer; I'm sure I can find them) so I can send you an example if you like.
Thanks for that example, Sabine! Blessings!
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