Unrelated coincidences??
Posted , 6 users are following.
I have premature ovarian failure.
Went through menopause at 35.
I have hashimotos and hypothyroidism.
ANA positive.
Had diverticulitis and had to get sigmoid colon removed.
I've had a TIA.
Multiple blood clots and pulmonary emboli.
I have Menier's disease.
I have fibromyalgia.
I have osteoarthritis in both knees.
Nasal inflammation.
High cholesterol.
Asthma.
Gall bladder removed.
Lupus anticoagulant positive.
High platelet counts.
Elevated C-reactive protein and sedimentation rates.
But.....every doctor is telling me all these things are just unrelated coincidences because I've tested negative for Lupus and all other autoimmune diseases. Do I just have terrible luck?
I'm suffering terribly and need guidance and helpful info.
0 likes, 7 replies
lily65668 kandijack
Posted
Did you just have terrible luck? I suspect not entirely.
Most of us spent at least 10 years being told our collection of disparate symptoms were unrelated before finally getting a diagnosis. On the other hand, one shouldn't try to explain everything away by saying it's autoimmune. There's always room for coincidence (and plain bad luck) as well.
Just looking through your list, I can say off the top of my head that Hashimoto's thyroiditis is an autoimmune disease, and hypothyroidism is a common symptom of many AI diseases other than Hashimoto's as well.
Many sufferers of AI conditions are not ANA positive, but the fact that you are would suggest to me that there's something wrong in that department.
Sjogren's and SLE often overlap with fibromyalgia.
Nasal inflammation may be caused by extreme dryness of the mucous membranes inside the nose - a common symptom of Sjogren's.
Sjogren's is also known to cause lung inflammation, and hence asthma, in many sufferers.
High CRP can be a sign of various conditions, but also suggests an AI condition.
That's just my contribution. I'm sure others on this forum will come in with their suggestions too.
kandijack lily65668
Posted
I'm hoping all this isn't just bad luck.
It's frustrating not having a diagnosis.
My rheumatologist is stumped and thinks it's all unrelated coincidences.
aitarg35939 kandijack
Posted
I'm with Lily. Is it a rheumatologist who's saying everything is unrelated & you have no AI issues, or is it a gp &/or gynecologist? Not that rheumatologists don't treat us dismissively, for they do, but I expect more ignorance from a gp & gyno when it comes to AI disorders.
kandijack aitarg35939
Posted
It's a rheumatologist saying everything is unrelated.
aitarg35939 kandijack
Posted
amkoffee kandijack
Posted
I'm going to post this again because apparently I made a mistake and lost my comment.
I am concerned with your elevated inflammation markers. That's the C reactive protein and your sedimentation rate. both of those being elevated can be an indication of an autoimmune disorder called polymyalgia rheumatica. PMR has very similar symptoms as fibromyalgia so I have to question your fibromyalgia diagnosis and wonder if it really is PMR. It's very important that you get checked for PMR because the pain from that which can be very painful can be controlled with prednisone. It's not a drug that anyone wants to take long term because of all of the nasty side effects but it does an excellent job of relieving the pain and inflammation from PMR. The best way to find out if you have PMR is for your doctor to give you a course of low dose prednisone for a week to two weeks. I'm talking about 15 mg to 20 mg. If your pain subsides in that time (and in a lot of people it only takes a few hours from the first dose). If you look up information on PMR you will find that it's an old person's disease. Some articles will tell you that you can't have it before your 70 years old but that's just not accurate anymore. I was 55 when I was diagnosed with it and anything over 50 is normal. But you CAN get it in your forties. I don't know how old you are but you can read up on it and talk to your doctor if you think your symptoms match those of what you read. Good luck to you. I have a lot of diagnosis as well. And it gets very frustrating having to see one specialist after another and everybody wants to added medication for you to take it just sucks.
kandijack amkoffee
Posted
I will look into PMR.