Scleroderma & Raynaud's UK (SRUK)
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Abnormal ECG

Feeling apprehensive- I've been struggling to get an appt with my rheumy and need a prostacyclin infusion as my raynauds is really bad. over 18 months since my last appt and on a cancellation waiting list as no routine appts for months.

A few weeks ago I saw the GP as I've been having palpitations- he sent me for an ECG and the result came back abnormal.

He is sending me for an echo and chest x ray with the reason for referral as ' ECG showed a possible P pulmonale'

Feeling really concerned as I've googled this and it could be a symptom of scleroderma if I do have a problem.

I know I'm jumping the gun but my rheumy said it was a matter of time before my symptoms would show.

I asked my GP if I should inform the rheumy and he suggested we wait for the results of the tests

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I've been having palpitations too, and they do make one anxious, especially if something turns up on the ecg. Apparently heart problems are under-recognised in scleroderma.

Waiting for the test results seems sensible, but then escalate the fuss as your wait for needed Raynaud's treatment is not OK anyway.

All the best with this.

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Thank you for replying, you need to get checked too, hope alls ok xxx

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Winfield,

My suggestion for you, if you are showing results that have anything to do with your heart, is to ask for referral to Cardiologist. Two weeks ago I had to have emergency surgery for pacemaker. I have complained of palpitations for years, neither GP or Rheumatologist have felt it necessary to follow-up. My very serious situation was found when I went to have simple Carpal Tunnel surgery and they sent me to ER instead. That was 2 weeks ago and now I have a pacemaker to keep me alive. I trust my Rheumatologist as far as my Lupus is concerned but she did not see this coming. One specialist, or GP, can not know everything - they are suppose to work together, but even the Cardiologist was not interested in speaking to my Rheumatologist - just needed to do his job.

I don't want to scare you or imply that you have serious issue, just take care of you first, and try and get them to work together on your behalf.

Chapter 🌹

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Thank you for replying and hope you are making a good recovery.

I asked my GP for a cardiologist referral but he said he wanted to wait for the test results - I do feel concerned though and will ask for a referral on Monday.

My mum has a heritable heart condition and has a pacemaker plus my daughter has Postural Tachycardia Syndrome, another heritable condition - think there is too many possibilities- need to get checked properly

Have been having dizzy spells recently and put that down to needing verifocal glasses - its easy to find reasons and excuses for symptoms

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I'm curious, what medication are you on (if any) for the Raynauds? Could it possibly be causing your palpitations and lightheadedness? Everyone is different and tolerates medication differently. But I could not tolerate Procardia XL or Norvasc. They made me very lightheaded, fatigued, nauseated and my heart felt like it was pounding out of my chest.

I wish you the best of luck. I was just diagnosed with Raynauds and scleroderma this year. I just need to say, we have to be our own advocates. If you aren't happy with what care you're getting or what you're being told just doesn't seem right, pursue further answers. Sometimes doctors look at one problem and not the whole picture. Good luck!!

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I take nothing at the moment. I was on nifedipine but it gave me headaches - I've had prostacyclin infusions but they haven't helped.

Going to give them another go though - pretty desperate

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