I’ve been unsure as to whether to write about this, but I figure this blog is as much about my journey as it is about raising awareness, sharing tips etc, and writing usually helps me make sense of things.

So with all the hospital appointments I’ve had of late, I’m feeling a bit unsure of what it all means. The initial referral was because of my dizziness and fainting spells, with Postural Tachycardia Syndrome (PoTS) being the main suspect. And while I am undergoing tests, and we have a plan of sorts on that front, that particular appointment has led to another referral which has left me a little unsure of the things to come.

As you are probably aware, 14 years ago I was diagnosed with M.E./C.F.S. Now throughout the years there have been times I have suspected other things at play; which is what led me to bringing up PoTS with my GP. But I never suspected that it could be the case that I had been misdiagnosed. I must stress I still don’t know if this is the case, but it is something which has been hinted at.

When my cardiologist asked me about any other symptoms; not just those which had led to my referral to him, he mentioned that many fitted with symptoms of Ehlers Danlos Syndrome (EDS). But that it can be difficult to get diagnosed, if it is that, as it’s another condition that many doctors don’t necessarily believe in, and unfortunately he is unable to diagnose it because it isn’t his speciality. And so I didn’t think anything more about it, maybe it was something I should pursue at a later date, but for now if we could get the dizziness and fainting under control I’d be happy.

I guess that attitude has been heavily influenced by being left to manage my condition with very little medical support over the past 14 years. Because he said it would be difficult to get diagnosed if it is indeed something I have, I assumed nothing would come of it; it would be one more thing that would be ignored until I had the energy and courage to pursue getting it investigated.

How wrong I was! In his letter to my GP my cardiologist requested a referral be made to a rheumatologist. The main focus it seems is getting my hypermobility diagnosed in order to be further referred to specialists. But it is something I didn’t expect to happen, and I have no idea how to feel about it.

In one way I am hopeful that maybe this will lead to a more accurate diagnosis, and therefore better management techniques. From the research I’ve done since, I don’t know if I will eventually get an EDS diagnosis or one of Hypermobility Spectrum Disorder (HSD), that’s if I get a diagnosis like that at all. But in all honesty, I don’t care. If it leads to greater knowledge of how best to manage my health, then that is all that matters.

I am also relieved and immensely grateful that I have found a doctor who not only wants to treat the symptoms which are relevant to his speciality, but also look at the bigger picture in terms of ALL the symptoms I get and try to figure out that puzzle as well, through referring me to other specialists.

But in another way I feel somewhat of a fraud. IF I have indeed been misdiagnosed with M.E., then have I been writing inaccurate blog posts about life with M.E.? Have I been wrongly accepted into the M.E. community? I know if I have, it hasn’t been intentional because that is what I was told was wrong with me, and I fully believed it. At the same time though, there is so much misinformation out there already about M.E., have I unintentionally added to it by describing a life which may not actually be one of someone living with M.E., but instead another condition which causes similar symptoms? Or perhaps I do have M.E. but a different condition means certain symptoms are exacerbated more than they would normally be with just M.E.?

I don’t expect any of this will lead to any kind of miraculous recovery, but better management of my symptoms could well lead to some form of improvement. And I can’t deny the happiness I feel at that possibility. I know whatever happens I will still be chronically ill, but knowing what is actually wrong, and hopefully being able to manage my symptoms better has got to be a good thing.

Of course, all this could be terribly optimistic of me anyway, the referral may not go the way I expect. Should I dare be so hopeful that the fact my cardiologist believes there is something else wrong, even hints that I may have been misdiagnosed, that it means other doctors will agree with him? That maybe I’m on my way to finding out more about what is wrong with me? I have had so many appointments in the past where everything has been blamed on C.F.S/M.E that I really don’t know how this appointment will go. I was so surprised, and immensely relieved, when I met my cardiologist for the first time and he immediately believed there was something else causing the symptoms I’d been referred to him about. Hopefully this rheumatology appointment will go the same way, but I can’t help but be a bit anxious that that won’t be the case and we’ll be back to blaming everything on the M.E.

I guess only time will tell….


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