Got The Rheumi Letter...

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Got The Rheumi Letter...

Postby PhilDiggle » Tue Nov 17, 2009 12:02 pm

Alright guys,

not sure if this was the right place to post this, but thought I'd type out the letter I got from the Rheumi today. Not an issue for me, quite a quick touch typer lol. Not impressed really with the letter myself. I'll explain why after:

Thank you for your full and helpful letter regarding this 21 year old student who has suffered with arthralgias, myalgias and excess fatigue for the last 2-3 years. His sleep is also of poor quality and he has noticed his concentration power is obviously reduced compared to normal. He has been reading around these subjects and has come to the conclusion that he must have fibromyalgia. Naproxen has not helped. There is no history of Raynaud's, rashes or mouth ulcers, i.e. nothing here to suggest a connective tissue disease. He has had numbness in the 5th finger on the left. There is no other past history of note. He has no allergies. He is a non-smoker. There is family history of MS in his mother and ischaemic heart disease and insulin dependant diabetes in the father. He has been otherwise well.

Examination revealed a thin, fit and well gentleman with no lymphadenopathy and no nail fold capillary dilations. Pulse 80/m regular, blood pressure 170/90 and heart sounds were normal. There was no abnormality in the chest, abdomen or central nervous system. Locomotor examination was normal excepting that he had evidence for joint hypermobility. The 5th fingers hyper extend, both knees hyperextend, elbows hyperextend (Beighton's score 6/9) He did not demonstrate excessive pain behaviour today and I must say I couldn't convince myself that he had positive FM tender spots.

I think this gentleman has got joint hypermobility which in itself is capable of causing arthralgias and myalgias but not excessive fatigue. I agree that he may be developing a FM type problem. I explained to him that FM is a diagnosis of exclusion so I have sent of a large number of screening blood tests today (the results of your blood test were not available on isoft) although I expect these results to be normal. Assuming that this is the ecase, irrespective of whether we label him FM or hypermobile or overlap of the 2, his symptoms will then represent a safe but nuisence problem, i.e. activity related pain and fatigue increments would not equate to activity related tissue damage so it would be perfectly safe for him to remain active even if this causes extra discomfort.

We discussed the possible use of amitriptyline today. I have explained to him that amitriptyline is an old fashioned anti-depressant which causes somnolence which we can use as a useful side effect to induce sleep where such sleep is difficult to come by, and thus normalise sleep patterns in patients with sleep disturbance in relation to FM. If you are going to try this, start at 10mg and titrate the dose up by 10mg every 5-7 nights until you get to the point where he sleeps well through the whole night without feeling sleepy the following morning. If he fels over sleepy the following morning you would hve to titrate the dose back down a little.

Lastly because of the numbness in his left finger I think it is sensible to organise nerve conduction studies to exclude other possibilities. Once I have got these results to hand I will let you and he know. If I haven't made arrangements to see him again but if any of the blood tests or never conduction studies do show abnormalities I will get him back of course for further discussions as appropriate.


Hmm.

To me, I felt he wasn't thinking about the job he was doing when he was examining me.

Points to note in that letter:
  • Not once did he ask about mouth ulcers - and yes I get them quite often.
  • Mentions I'm thin and fit. I undressed to underwear and it's quite obvious I am not 'thin' especially with a BMI of 32.
  • Tender spots - he didn't test these obviously from his initial thoughts, but he did press parts of my body which were mighty tender to the point where I flinched!
  • He knows the blood tests are going to be normal because I told him that I had the full works done prior to going - and they all came back normal. He just couldn't look for more than 30 seconds to find them on the system.
  • Somehow, I find it hard to believe that Hypermobile would cause such symptoms like numbness, sweating and the fibro-fog feelings.

Really annoyed at the fact that he also states "has come to the conclusion that he must have FM" I haven't. I simply said I've done some reading and a lot of things fit, and so I've come here today to rule it out or get it investigated.

So, I guess the next step from here is to go back to my GP to be referred for a second opinion. If that comes back the same - then I'll have to accept that. There's just something telling me that what this Rheumi has said is simply to shrug off a patient.
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Re: Got The Rheumi Letter...

Postby *Lisa* » Tue Nov 17, 2009 12:31 pm

:wave:

Not sure GP will refer you to someone else on NHS but you can see another one privatly and maybe sit with the GP and go through the letter with him and explain what you feel is wrong and see how he can help...
As a Public Moderator & Admin 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...Lisa
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Re: Got The Rheumi Letter...

Postby PhilDiggle » Tue Nov 17, 2009 12:40 pm

hmm, I have thought about the private route.

Trouble is, where I'm based in Manchester, the GP's I'm registered at there aren't any white british people as doctors there. I'm not being racist when I say that, but when you need to talk to someone about your problems it's hard to know if what you are saying is what the doctors are actually understanding it as. Plus sometimes I feel like the GP's I'm at don't really listen to you.

Mum says that I should be able to get a second opinion through the NHS if I ask the receptionist at the GP's as they go through the choose and book system online.

I'm not normally a grumpy person lol. I just feel like the diagnosis is unjustified. By no ways do I claim to be totally right and have sound medical knowledge - it's just instinct. I think what's also influencing me as well is that Mum used to be a nurse and she thinks my symptoms go deeper than just being hypermobile.
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Re: Got The Rheumi Letter...

Postby *Lisa* » Tue Nov 17, 2009 12:47 pm

I know what you mean...

I was the same, needed a better outcome of the appointment, more understanding & knowledge.

Iv had letters like yours! they talk about you like your some manic person moaning :crazy:

Just to be believed and listened to sometimes is so much better...

Im down south so we have a different system....

If your finding a consultant hard to understand/communicate with maybe ask for his nurse to sit in on the appointment and she can help?
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Re: Got The Rheumi Letter...

Postby LinzWorld » Tue Nov 17, 2009 4:12 pm

Hypermobility is a risk factor for developing Fibro so if you had HMS, you'd be high risk to develop Fibro at some point anyway. And he's wrong about exercise and hypermobility - whilst exercise is extremely important for HMSers (and Fibromites) if not done properly with HMS, it can lead to joint wear & tear, subluxations and dislocations.

Btw, HMS often comes with Dysautonomia, so all your symptoms could potentially be explained by an HMS diagnosis.

To see another rheumy through the NHS, you would need a GP referral, so you need to find a GP you can work with (or go privately for everything).
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Re: Got The Rheumi Letter...

Postby PhilDiggle » Tue Nov 17, 2009 4:32 pm

Hi Linz,

Thanks for that.

I've just returned from the GP's, got an appointment booked to see the Locum doctor on Friday morning since the two doctors I see there are both busy ... apparently.

So will see what they say then. If I can't get a second opinion then I'll most definately look into private health care options.
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Re: Got The Rheumi Letter...

Postby DerekJ » Tue Nov 17, 2009 7:42 pm

I had a very similar experience. The first rheumatologist that I saw was very short on ideas and seemed to have his mind elsewhere so I asked my GP for a referral and a second opinion on the NHS. The second rheumatologist listened a little better but was struggling a bit and, as he had a student with him, I felt a little sorry for him so I suggested fibromyalgia as I did not want the poor guy embarrassed in front of his student. He of course leapt at the suggestion. And so I received a diagnosis of fibromyalgia but I was, naturally, not entirely happy, so I sought a third opinion privately.

Perhaps unwisely, I selected someone with a special interest in FMS/ME/CFS and thus increased considerably the chances of the diagnosis being confirmed, which of course it was.

This was about 8-9 years ago and the rheumatologist that I visited recently had some other ideas and was not at all convinced by the diagnosis I was given. I take all this with a pinch of salt as I really do sympathise with the medical profession who struggle to work in this notoriously poorly understood area.
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Re: Got The Rheumi Letter...

Postby Lisa21 » Tue Nov 17, 2009 9:39 pm

I had the same thing when I was referred to a "specialist" Rhematologist. She seemed to already have made her decision not long after I sat down with her. She said that there would be no need for further tests.
Told me I have "some" joint hypermobility, and nothing else except I needed to go to CBT to stop the cycle of pain. Patronising witch I thought!! She said in her letter that she could not detect any trigger point, but she didn't really try at all. She also mentioned that she was short staffed that day as well, so maybe I was an inconvenience to her by turning up that day! My GP said that I would not get a 2nd opinion any different to that one. I was totally gutted and felt so low.

I went back again after more problems and other illnesses diagnosed, and she then referred me to my local NHS hospital, and the Rheumatologist there diagnosed FM there and then! Phew!

Please don't give up!!
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Re: Got The Rheumi Letter...

Postby dollydaydream » Tue Nov 17, 2009 11:16 pm

Hi Phil

Can I ask you about your blood pressure. Is it really 170/90 - or did you mis type on a number keypad as I have to say this is rather a high systolic rate.

Can I also comment on 'he has been reading around these subjects and has come to the conclusion that he must have Fibromyalgia', Please, will people note, doctors get very twitchy when people come to them, and ask them to confirm their own diagnoses. I have an excellent relationship with my current Gp, but even with him, I will gently lead him by the nose and say 'Ok, you have said I suffer from a,b,c,d,e,1,2,3,4,5. is it more likely I have all these different diseases, or one disease with these presenting symptoms?' What could all these symptoms got in common?' I know my stuff, and I know what to ask when he is going away from what I want him to consider. 'ok, you say it could be polymyalgia rheumatica - and that is most common in my age group?' knowing full well that it isn't, because I have been reading up. He then says - 'well....no'. so I say 'ok, I'll agree that most of the typical polymyalgia rheumatica things you have mentioned seem to fit, so if the age range makes it unlikely - what other rheumaticy type thing could we consider' . He usually enjoys our discussions as I make him think.

You have to read up and manage doctors, without them knowing they are being managed. They have to think they are clever and coming up with their own idea's.....abit like husbands! :lol:
Hoping you are OK

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Sending you love and light

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Re: Got The Rheumi Letter...

Postby LinzWorld » Wed Nov 18, 2009 11:34 am

Totally agree with you Sarah - dealing with doctors is an art!
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Re: Got The Rheumi Letter...

Postby PhilDiggle » Wed Nov 18, 2009 2:54 pm

Oh yes, managing Doctors certainly is an art. Where I used to live prior to moving to Manchester, my GP was very kind and tentative so talking to him was fairly easy. The surgery I'm registered at here is the complete opposite. The locum I'm seeing on Friday will hopefully be different to the rest, if not I'll have to play the waiting game again as I plan to move south next August.

Dolly, no that's not a typo. My blood pressure goes up rather a lot when I'm at the Drs and Hospital. White Coat Syndrome. It's really bizzare because I'm comfortable about going to the Drs etc and not in a panicked state, yet when they take my blood pressure it's always sky high!! I once had a blood test where she took my BP to be 180/96 and when she took my blood and let me recover my BP was about half that!

I understand Drs obviously get annoyed with people coming to say "Oh I've got this, can you confirm it" what got me is that I never came to them with that attitude, other than simply saying that Google is a wonderful thing, you list symptoms and it comes up with possibilities can you shed any light on it for me. Which then sparks off the discussion of what symptoms i've got etc etc.

Definately not going to give up on this, I personally think it stems deeper than Hypermobility, I've had that ever since I was born and never had a problem until recent years.
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Re: Got The Rheumi Letter...

Postby smiler22 » Thu Nov 19, 2009 12:58 am

yes you could have hyper and fibro it is often mixed together. i feel you rrhuemo and gp are simpky trying to rule out everything else before they give you the exact diagnosis..... it could be that you do have the hyper as youve said you have had it for a long time. but may be you just have some tendencies of fibro but dont actually have enough to diagnoe it. and maybe there is something else causing these probs. that may unfortately never be found and given a name.

i had the works of all the tests etc. and because i have problems i was born with they went down the route thta is it xyz to do with what i was born with. but obviously it turned out that i do have fibro.........i know it gets frustrating not knowing what is wrong. but i have to see it from the gps position that if they start saying yes you have fibro to everyone who is going in with these said symptoms then it gets to the point where people dont believe fibro exists as there are so many people diag when perhaps they shouldnt be. as they may not have been tested for everything.

in this i mean i know of some people who have had problems, and said i feel it may be fibro because my friend has the same symptoms. they have then been told yes you have fibro. but at a later date have been diag with something else and told it wasnt firbo in the first place. the gps are in a stick wicket as there is still alot to be researched in fibro.


i think sometimes people are being labelled and diag with fibro without having th e correct tests to rule out other things. it is like the me row all over again. trying to get people to believe that fibro does exist.
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Re: Got The Rheumi Letter...

Postby Mr.A » Sat Nov 21, 2009 11:15 am

First off how did he come to the conclusion that there was no central nervous system abnormality? Did he perform brain scans? If so which scans?

I can totally sympathise especially with the “I’ve got these symptoms, please help me…I’m not sure but I suspect it may be X”. Reply: “Patient believes he has X but there is no evidence”. It’s so frustrating when they pervert your own wording.

I spent years of my life trying to convince them that I had a sleep problem despite it’s life altering severity.

What’s worse is when they see you as a threat, as if you are attacking them (legally), they will do anything to get rid of you, when all you want is a diagnosis and adequate treatment. They also hate being undermined in any way, after all you are merely the patient and they are the doctors :roll: . I have to be careful here not to tar all doctors with the same brush, but I have no doubt that FM and similar symptom-sets have a really bad name in the medical and mental health industries, most doctors want to stay well away from it.

I liked what dollydaydream said, ideally Doctors ought not behave the way they do, it shouldn’t be some kind of challenge or great feat to convince another human being that you are in physical pain and that you need sleep... ideally.
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Re: Got The Rheumi Letter...

Postby PhilDiggle » Sat Nov 21, 2009 4:06 pm

Mr.A wrote:First off how did he come to the conclusion that there was no central nervous system abnormality? Did he perform brain scans? If so which scans?
.


Very good point there Mr A. Think I was angry at the letter that I missed to point out that note. Surely you can just rule something out without testing it first? Idunno..

Well I Saw the Locum yesterday - waste of both mine and his time. He basically said because he's the locum he didn't really have the authority to send me for a second opinion and that I would have to see a doctor that works in the surgery - so I'm back in again Tuesday afternoon.

Half of me wonders if I can hold on for another 9 months to see a new set of doctors because I shall be moving next summer.
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Re: Got The Rheumi Letter...

Postby PhilDiggle » Wed Nov 25, 2009 7:47 pm

Well I just thought I would let you know how I got on with the Dr that I saw yesterday.

Fortunately I saw the same doctor who referred me, so I think she recognised my face.

She read through the letter and asked what could she do for me, so I asked would it be possible for a second opinion and explained my points. She was a bit weary to giving me a second opinion as I've been put in the unfortunate (or fortunate in some peoples eyes) that I've seen the head of Rheumatology for the whole of North Manchester and Surrounding Areas. Which means, if I get a second opinion on the NHS, if a different consultant looks at the notes he'll see this Consultants name on it and refuse to give me the appointment.

Which in my mind is totally unfair.

And the Dr knows this to be true because shes done it a couple of times now and both times they've been rejected..... which to me obviously says something about the consultant too.

My Dr rang the Practice Manager whilst I was in her room to discuss it with her too, and she agreed with my Dr, and the best case would be to go Private at a cost of £130. Unfortunately, it's £130 I haven't got!!

So I think for now, I've waited this long to get this far, I may as well wait another 9 months until I move to see a different GP - and hopefully I'll get a referral there.....

I'm really quite annoyed with it - but I don't think I'm that annoyed to the point where I feel as though I should make a complaint? The Dr asked me did I want to.. to which I said no, but I just felt irritated by what the consultant said and a little insulted.

:banghead: :banghead:
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