Finally a diagnosis

[Tenerife1962]

Hi all I’ve been reading this site for a while now and have decided to tell my story,16 years ago I stated getting terrible prickly heat,since then I have osteoarthritis,high blood pressure,type 2 diabetis,last year I had an operation on my big toe for halux ridgedus my consultant wasn’t happy with my gait so referred me to a rheumatologist after lots of tests he diagnosed me with lupus in the mean time I was also diagnosed with mild cognitive impairment at the memory clinic,after 22 years of working I’m now unable to work,on the 28th September last year I had a tightness in my neck and slight pain in my neck to cut a long story short I’d had a heart attack as the troponin levels were raised 166,I was given an angiogram ware no disease was found and was diagnosed with myocarditis secondary to lupus my next app with rheumatologist was in March but I’m now seeing him tomorrow as my Gp thinks I should see him earlier,I have awfull pains under my armpit and in my shoulder blade was referred to breast clinic nothing abnormal found consultant has said it’s lupus related I can now tell when I’m having a flare up I was awarded the standard rate of pip for daily living but only 4 points for mobility which is laughable I don’t have anything financially to do with the house now my husband has taken over all that and my daughter does my meds as I forget to take them they come in a dosset box I will see what happens tomorrow and I’ll let yous know thanks for reading x

[Rienij70]

Thank you for sharing your story with us. I am sorry to hear about your plight. You will find lots of support and information on this site. Big hugs coming from me. Rienij xx

[Barnclown]

I’m v much feeling for you tenerife, and am glad you posted. You have been & still are coping with A LOT, so it’s really really good your medics and your family are caring and attentive. You’re clearly a courageous person, but this has got to be very hard - for 16 years at least you’ve been surviving some very serious health crises + BIG life-changes...and you still have plenty on your plate. It’s really good you’re here where there are always others coping with more or less similar issues, ready to pool experiences & advice

Am wishing you every best wish, and hoping you’ll keep us posted 👍💐🤞✌️🍀❤️ Coco

[honeybug]

Sooo sorry Tenerife

Gentle gentle hugs kisses love and prayers.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

[Aurali]

Hi Tenerife1962, so sorry to hear of all your problems. I have lupus and after working all my life, at 56 had to make the tough decision to stop working. Financially its always hard as I have no partner but we have to keep going and make the best of the life we have. I wish you all the luck in the world. Keep us posted. 🤞😁💕

[Tenerife1962]

Hi been to hospital today they gave me a steroid injection and started me off on Hydroxychloroquine 200mg one twice a day and they took some more bloods and apparently I havnt been given a formal diagnoses of lupus but according to the cardiologist I have 😆 I wonder how many more boxes I have to tick before I get my medal 🤔 so back in 4 months see what they say then by the way aurali im also 56 x

[Chapter]

Hi Tenerife, I am sorry for all you have been through to get to this point. I am interested in how the Cardiologist diagnosed Lupus from your heart problems, were you able to get an explanation?

I was diagnosed with Lupus almost 8 years ago now, have had positive ANA’s, negatives and crazy highs. Several flares - mostly involving skin, joint and muscle pain and fatigue. Have been lucky that have been able to mostly continue on without any bad setbacks. Well, that was up until November 2017. At that time on a visit to hospital, for minor day surgery, I was admitted to emergency because my heart was failing, and then transferred to a bigger hospital get a Pacemaker. I know that I had not been doing well beforehand but put it all on Lupus fatigue. At the time I questioned Cardiologist if it had anything to do with Lupus and he thought not. Over the year since then I have had all sorts of tests, xrays, scans, ECG’s, stress test, and last week had angiogram. In December, my Rheumatologist said to stop Hydroxychloroquine and not to take again unless she said so. She had read the same article that I had about Hydroxychloroquine in rare cases causing toxicity in heart. So the results of my angiogram were - I have nice clean arteries so nothing to fix there, but unfortunately my EF is only 32%, when I got my Pacemaker is was 55%, my heart is still swollen from before Pacemaker problem, and the muscle (heart) is weak. They cannot tell me why - possibly previous virus or inflammation and maybe Lupus. Now I am on more BP meds and Beta Blockers to try and take the load off of my heart.

At this point, I don’t think the Cardiologist is that interested in finding the exact reason my heart is sick, mostly just trying to stop deterioration and treat according. I am fine with that but, as we all want to know, “WHY is this happening”. I know that for me, the WHY, makes it easier to deal with.

So, why did your doctor diagnose Lupus from your heart. What did he see?

You take care of yourself and get yourself rested and healthy.

Chapter 🌹

[Tenerife1962]

Hi there was no disease found on either tests,angiogram and echocardiogram showed no damage I couldn’t have an mri as I have a metal pin marker in my breast,so when I went to the heart team all they said was something had definitely went on with my heart that day because of the troponin levels,I asked could it not be off something else they said no so I was diagnosed with miocarditis probably thru lupus,I asked could it happen again they said yes,I saw my rheumatologist today and she said they are blaming the lupus because they don’t know what’s happened I’ve had a steroid injection today and just took my first hydrochloroquine tablet tonight which tasted awfull I’m now due back at hospital in 4 months and that’s all I’ve been told hope that helps a bit x

[Chapter in reply to Tenerife1962]

Thank you very much! I always assume that when they say come back in 3 months oe 4 months, that things aren’t that bad and I will be OK for now. 😊😂. I hope the Hydroxychloroquine helps you feel better, remember though that it does take a while for it to work. I remember it being about 6 months before one day I realized how good I was feeling.

I saw my GP yesterday to go over report from Cardiologist. He has been trying to eliminate causes, and is now leaving auto-immune on the list of possibilities. I feel fine, except getting tired easy, so it is hard to except that I have a serious problem. Will go back to Cardiologist on April 8, for more testing and see how I am doing. My job in meantime is eat healthy (which I do anyway), gentle exercise, lose 5 pounds (going for 10) and take meds. Not that hard really, hope it helps 😊.

Take good care of yourself,

Chapter🌹