Hi all it's been a while! Just had my test results from mri and it's not good
I've now been diagnosed with cardiovascular disease and also damage to my brain. I've been having the chest pains for over 2 years and I knew something was terribly wrong! I have had bouts of pleurisy for a year ,,Also my memory has been deteriating so badly
I was also diagnosed with thyroid disease , its now effecting my kidneys. How is it possible things are left to get this bad before a diagnosis! My cholesterol and blood pressure are normal so so there's nothing I can do to even help myself. Has anyone else had a diagnosis like this? Xx
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Debsssss
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Sorry to hear of your diagnosis Debs.you ask how things can get so bad before diagnosis...in some cases especially kidneys the damage is done without showing any symptoms. Approximately 60% of lupies have kidney involvement without knowing with the damage done with the first few years of illness before its apparent. If you have 1 AI illness then there is a good chance you will have others as they go hand in hand.....I have 6 🙄 .i have hashimoto's (autoimmune thyroid disease) class v lupus nephritis and lupus.ive also had pleurisy in both lungs at the same time which inflamed my heart and put me into heart failure for a year.my bp is controlled by meds my cholesterol is normal. I have breathing issues as a result of repeated lung inflammation.
Since being on lupus meds my kidneys are stable ,my breathing has improved although I'm still steroid dependant and I'm no longer in heart failure.its important to get your thyroid disease well controlled.i see an endo for mine as I can't take thyroxine .
There are things you can do to help yourself...eating and sleeping well keeping moving keeping stress to a minimum.
These diagnosis are a shock at first so give yourself time to process it all .
Keep smiling sending hugs 🤗 xxx
P.s how are your pups ? .
P.p.s I trying mct oil to see if it helps with cognitive function.its also good for the heart.the only just started so jury is still out xx
Hi Debs, I am just so very sorry that you have had such a terrible outcome from your scan. You need to ask questions of your Consultants but for now you need to process things. If it were me I would not be shocked because I have been left untreated, no monitoring, no bloods for the past 18 months so no care whatsoever. If you have been monitored regularly you have every right to know why things were allowed to progress in this way. I really hope that you will now get the care, treatment and monitoring that you need. I am sure others here will be able to provide excellent advice but I just wanted to send a big virtual Cwtch and the hope of a better tomorrow lovely xxx
Just really sorry you are having to face this. We can be more helpful if you give us more information. When were you diagnosed with lupus? What involvement did you have? What type of MRI did you have?
Do you mind telling us your age? I ask only because lupus and the other autoimmune diseases cause early cardiovascular disease. The thinking is the chronic inflammation damages the arteries. They have tried statins but that did not alter effect.
Yes, I have atherosclerosis with normal cholesterol levels. I have a family history of heart disease, and it turns out the problem is elevated lipoprotein a. Do you have family members who have had early heart disease? My cousin has lupus and elevated lipoprotein a and she had a heart attack at 50. I don’t say that to scare you but to ask questions.
The cognitive issues with lupus are well-known. So far, there is no preventative treatment, though they are studying the neurological issues intensely now.
Again, I am so sorry you are finding out so much all at once.
Debs what horrible news! I felt your pain through your message and my heart goes out to you. How alarming to have this all happen at once, when like you said you’ve had the chest pain for some time now. Sending positive and relaxing vibes to you and hope you have a good care plan put in place, take care of yourself x
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Lupus diagnosis 6 months ago
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