Looking for a diagnosis of something

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Looking for a diagnosis of something

Postby WakingNed » Tue Jan 24, 2017 5:32 pm

Hi there,

I found this forum after reading much about the possible causes of my symptoms. I decided to register and see if I could learn something useful. Briefly, my symptoms are characteristic of FM, especially fatigue, aching muscles (especially in the morning), headaches (sometimes extreme), deep pain after exercise, poor sleep, breathlessness on exertion, cognitive impairment, depression - need I say more?

I've had these symptoms for years, and I've seen many specialists, including heart and lung, and all have found nothing to report. I had a thoracotomy in 2012, but I don't think everything started there. I was already breathless and easily tired, but it has become much worse in recent years. I've asked my GP for a referral to rheumatology, and I've been knocked back before now. I'm still waiting for news of a new referral to a different hospital.

I don't know what I have to suffer before I'm seen as a possible FM patient, but if it's much more than I already experience, then I can only wonder how you guys cope!

Are there any others out there who, like me, are suffering with symptoms, but can't get anyone to take them seriously? I suppose CFS might be more appropriate, but I was turned down by the CFS people on referral. What else could be causing these life-changing symptoms. I'm not at my wits end yet - thanks to my wife's tireless support, but if things get too much for her, where will that leave us?
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Re: Looking for a diagnosis of something

Postby perseus » Wed Jan 25, 2017 9:58 am

Hi WakingNed welcome to the forum. :welcome:

Since there's no one simple diagnostic test for FM or CFS, but is based on a collection of symptoms and judgement of the medical professional concerned, so it can be difficult to obtain a diagnosis. I expect there must be considerable difference in views depending on who you see. Have you seen a consultant before with these symptoms?

Stephen
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Re: Looking for a diagnosis of something

Postby WakingNed » Wed Jan 25, 2017 10:41 am

Hi Stephen,

Thanks for your reply. The answer is that I have not seen a consultant yet. My GP has tried to refer me, but the screening process has so far rejected my referrals, and it's not clear precisely why. I imagine I need to be at death's door, in crippling agony! I'm still waiting to hear from a rheumatology referral, but it could be a while - nothing new there, then!

Hopefully, I'll have something to report soon.
Cheers
Ned
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Re: Looking for a diagnosis of something

Postby perseus » Wed Jan 25, 2017 11:29 pm

That's a worrying development if your GP is fully supportive. Is a referral for a private appointment out of the question?
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia. Regards Stephen
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Re: Looking for a diagnosis of something

Postby WakingNed » Thu Jan 26, 2017 9:24 am

I'm afraid a private appointment is out of the question, at least for the time being, but naturally I'm working on it. More important is what you said Stephen, namely that this is a worrying development. I know that resources are stretched, and that the NHS is on a money-saving crusade (my wife works in the NHS - incredible stories), but the upshot is that many people like me could effectively be told "Sorry, you'll just have to live with it".

Well, I imagine I'll live, thankfully, but it's incredibly important to be able to name the thing that ails you. An unsolved health mystery just adds pressure from uncertainty, and leaves you out in the cold, with nothing to explain your symptoms. I don't know what might follow a diagnosis, maybe nothing much, but I want an expert team to tell me the best I can learn from current knowledge. I don't really see how that could be too much to ask, especially if there's no effective treatment.
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Re: Looking for a diagnosis of something

Postby WakingNed » Sat Jan 28, 2017 2:56 pm

I can almost not believe it after all this time, but I finally have an appointment with an NHS rheumatologist at the end of Feb.

Maybe now I can make some progress.
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Re: Looking for a diagnosis of something

Postby Claire'scomfycorner » Sun Jan 29, 2017 1:29 pm

Hi

At least WakingNed you now have an appointment with a rheumatologist in Feb :-D Good luck with it.

Hugs
Claire
x
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Re: Looking for a diagnosis of something

Postby Dorothy » Mon Feb 06, 2017 7:45 pm

Hi WakingNed,

I've just joined the forum and am about to start a new thread introducing myself. Before I do, I have to say you sound just like me. I'm also waiting for something/anything. I've had 2 Rheumatology appointments, both took a few months to come through after referral. Glad you've finally got yours through.

Dorothy x
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Re: Looking for a diagnosis of something

Postby perseus » Tue Feb 07, 2017 10:30 pm

WakingNed wrote:I can almost not believe it after all this time, but I finally have an appointment with an NHS rheumatologist at the end of Feb.

Maybe now I can make some progress.



Great News Ned.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia. Regards Stephen
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Re: Looking for a diagnosis of something

Postby WakingNed » Fri May 05, 2017 2:46 pm

Thanks everyone for the good wishes.

Saw the rheumatologist - looks like PMR - just waiting for endocrinology to rule out thyroid issues, then it's steroids for a 6 month trial.

Anyone know what I should expect/be wary of?

Thanks
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