Can anyone help me please?

[Bunny12345678]

I'm looking for advice as I'm getting desperate, I've been unwell for 8 months now, at Christmas I kept feeling ghastly and faint, palpitations and shortness of breath, I now have aches in my neck, above right breast and posterior right rib ache. My legs feel like jelly and head foggy plus tinnitus, bowels also not normal. Gps have given up on me so having to try and find any other way to get help. Vit d 27 in April and a Cardiologist said I have inappropriate sinus tachycardia, this has settled though. I've also started to develop Raynauds in my fingers and have freezing cold feet. I've had some private bloods just come back. I'd really really appreciate any advice please.

[MissusTee]

Hi,

The bloods you've had done are within the normal range. I would suggest different ones to include FBC, TSH, ESR, CRP, ANA, ENA, Rheumatoid factor U&E's.

Lisa

[Bunny12345678 in reply to MissusTee]

I've done a ANA which was negative

[MissusTee in reply to Bunny12345678]

It's very unlikely that you would have an autoimmune condition then, but its still worth having the other tests done.

[Bunny12345678 in reply to MissusTee]

Yes, I agree, thank you, I'm going shortly to get tests done..I really hope I get somewhere or can find a good dr

[Poppy221 in reply to Bunny12345678]

I don't understand the heart term that you used, but the feeling ghastly, shortness of breath and palpitations are things I've had, together with a feeling like stomach ache and a tightness in my chest - and I have pulmonary arterial hypertension (PAH) caused by the scleroderma, but there can be quite a few other causes of PAH. Can also cause dizziness. One other thing to ask about is pulmonary arterial hypertension (PAH). It can take a while for a diagnosis, though mine was picked up on quickly. There is a PAH society website you could go and look at which will give you all the details. The stomach ache I was having, and the chest tightness, were indicative of heart strain. At one point last year it got suddenly worse and I was very breathless and I went into A&E - for a few hours they thought it was a heart attack, but it wasn't it was heart strain. Heart problems can present differently in women than in men.

[Poppy221 in reply to Poppy221]

Further to previous - if you ask your GP about pulmonary arterial hypertension, emphasise the pulmonary arterial bit. When they take your blood pressure on your arm, they are measuring the systemic blood pressure. The pulmonary artery is between the heart and the lungs and the only way to measure the pressure in there, is for a cardiologist to insert a catheter through your arm and up through the veins to your heart and lungs. You can have normal blood pressure in all of your body and high blood pressure in that artery. A few non-specialist medical professionals are sometimes not aware, or have forgotten, the important distinction between systemic and pulmonary arterial blood pressure. I have on a couple of occasions had conversations which went "your blood pressure is low, are you sure they said hypertension, it wasn't hypotension was it?" "No, you are measuring the systemic blood pressure etc, etc".

Also, don't be too alarmed by all information on PAH - a lot of new treatments have been discovered in the last few years and the older information on it is very alarming and gave me a shock when I read it - but I'm doing fine.

[Bunny12345678 in reply to Poppy221]

Thankyou for your advice, i've seen two cardiologists at different trusts, as I had to move in with my family due to my health...the ones at Hull Royal said my ecg just showed ectopics but everything was ok, I feel they were really thorough...the next cardiologist at grimsby did an ecg, 48hr tape and said i don't have a heart condition, only inappropriate sinus tachycardia which is when the heartrate goes above 100bpm for no reason, a lot of people who develop this have their heartrate go up to 170bpm,mine seemed to hover around 110bpm...its resolved on its own currently (touchwood) despite him trying to push meds onto me for it, luckily I did my homework and learnt that they have significant side effects and can cause AF after around two years of taking them... my blood pressure seems to have been ok consistently apart from one postural drop at Christmas.

[Poppy221 in reply to Bunny12345678]

The PAH was confirmed through an echocardiogram initially, not an EKG, but I would think a cardiologist would be aware of PAH, so....... good luck in your ongoing search.

[Bunny12345678 in reply to Poppy221]

Thanks for the advice though, I wasn't impressed with my second cardiologist, he was quite dismissive of my symptoms..didn't explain about the condition he said I had, so I researched it myself in the end..i then worked out that he should have instigated further testing prior to giving the diagnosis that he did...you have to have your wits about you