AAARRRGH!!!!!

[Tally]

My doctor just rang me this evening. They want me to have more blood tests before they can make a referral to the Chronic Fatigue specialist. I am really frightened of blood tests and would really like to avoid these if necessary. Considering I had some blood tests 6-8 months ago when my previous GP made a similar referral and my symptoms have not changed, I tried to find out what is different about these blood tests.

 

They wouldn't tell me, so I asked if they could at least tell me what they want to test for now. I thought I could see my GP and find out what they tested for before and work out the difference myself. Well, she read out the entire letter from the specialist, but when she got to the list to test me for she just said, "and then there is a list," and asked if that answers my question. I said no because she skipped over the bit that would answer my question, so she started to read out the list and then said, "and four other things." I asked, but she would not tell me what the four other things were.

 

They want to poke needles in me and take my blood. Firstly, I think I have a right to know what they are testing for. Secondly, I would like to avoid this if possible.

[trekster]

Could you seek a 2nd opinion? Better still you could pay a fee for a photocopy of the letter so you can read it for yourself.

i managed to get a copy of my notes and paid i think £5 for a copy.

 

Sounds like your GP doesn't believe in ME if she did then you would have been given a list of the testing for items.

Book a double appointment to see her again then ask to see the letter or for her to read it out to you. Take notes

if you can so you can remember whats on the list.

 

Good luck

 

Alexis (who was never diagnosed with ME although the ME association believed her)

[Teresa]

Tally as far as I know there is no proven blood test for ME, well that's what we were told. T was DX with ME 4 year's ago after having Glandular Fever. She had a full blood test, meaning it covered everything and it showed that she had the Epstein-Barr virus EBV, which they suspected as the cause of chronic fatigue syndrome / ME, she was then monitored for several months before the DX was given. Even with the DX from the hospital she has had no real help, just give her melatonin which didn't help at all and was told to paces herself, still on a waiting list to see Chronic Fatigue specialist support. There is very little help out there, it's very sad. I must say T has improved in the past year just a little, wish it would go away completely.

 

Teresa

[JsMum]

can you not refer yourself to the cfs, in our area you can self refer.

 

I would imagine the blood tests are to cancel out things like deficiencies such as Iron, and other conditions that cause similair symptoms to cfs, there is some great websites out there for cfs and again like with autism, there is some great cfs services in pockets of the uk and its a post code lottery.

 

Good luck.

 

JsMumxxx

 

[smiley1590]

my mum suffers from ME ( also known as CFS)! she gets tired alot low energy and immune systems low means more infections virues don't know how she manages so well with it to be honest she has to keep busy sometimes or catches up with her completely we have family household anyways to keep her on her feet!!!

[Zakkala]

As trekster mentions, you can get a copy of it for a small charge.

 

Under the Data Protection Action you are entitled to see copies of all personal information held about you by any organisation. You just need to make a Data Subject Access Request and they have the right to charge up to £10 to provide you with copies of everything.

 

[Tally]

There is indeed no blood test for ME. I think they want to test for other conditions which may cause tiredness, to see if I have anything treatable. It's just that I think I have probably already been tested for the same conditions when I was referred to an ME specialist before I moved house earlier this year. I was hoping the new specialist in this area could use the results from my previous GP.

 

Today I had an answerphone message asking me to call back. When I did, the receptionist said, "who rang you? We have a lot of people here you know," as if I was being deliberately unhelpful. It's not my fault if people do not leave a name!

 

They did find out who called me, and they said, "we understand you are refusing to have blood tests." I am not refusing! I am just asking if there's any way I can possibly get out of it. I never said I would not have blood tests, just that I wanted to know if (and why) they were really necessary.

 

Well, they want me to see the GP who made the referral, who is not actually my own GP, just happened to be the one who was free that day. She is on holiday for two weeks and no one else can possibly help me in the mean time. I have an appointment for two weeks' time. So at least things will get cleared up then.

 

I get accused by doctors of being paranoid, and then doctors phone me up to tell me they have a letter about me but refuse to tell me who it's from or what it says . . . I just hate it when I am accused of things I did not say. I sometimes wonder if doctors' receptionists are actually trained in how to make people feel really stupid.

[Teresa]

Hi Tally

 

I do hope you get the right support that you need, sadly in our area we have found that there is a real lack of understanding of this condition, I hope you get more luck then we have. Doctor's receptionists, there's just the one that get's my back up at our GP's, she wont let you finsh a sentence also keep's buting in and doesn't listen to what your trying to telling her, the rest seem ok though. so I kinda understand where your coming from.

 

Good luck with everything Teresa

[Kathryn]

I get accused by doctors of being paranoid, and then doctors phone me up to tell me they have a letter about me but refuse to tell me who it's from or what it says . . . I just hate it when I am accused of things I did not say. I sometimes wonder if doctors' receptionists are actually trained in how to make people feel really stupid.

 

I think it's perfectly reasonable to want to know what has been said in the letter - I would feel the same.

 

I too wonder whether receptionists undergo special training in the art of being difficult or if they are just born that way!

 

K x

[chris54]

I too wonder whether receptionists undergo special training in the art of being difficult or if they are just born that way!

 

K x

Isn't it in their job description?

[Tally]

Well, I've just received a letter from the specialist telling me I need to contact my GP to arrange the blood tests. This was presumably sent out before the first phone call from the doctor. Now though, I have the contact name, address and phone number the doctor refused to tell me

 

So I might be able to ring them directly and ask if they can't use the last batch of blood tests! WOuld save the 2 week wait until the GP is back off holiday.

[Tally]

I had my appointment with the GP today. She said my previous tests were probably not the same and it would be easier if I just had a new blood test done. Easier for someone, not easier for me. She still won't tell me what the tests are, which I really don't understand. I don't see why I'm not allowed to know. It's not like it's potentially traumatic news, since these are conditions they don't even think I have, just need to rule out.

 

During the conversation, I mentioned my previous GP in Tiverton and the ME clinic in Devon several times, and she said I could call the GP in Tooting. Nice to know how hard she was listening.

 

It turns out they don't get any records from my previous GP, just a brief summary of illnesses I've had. Apparently this is normal.

 

When I was booking the blood test appointment, the receptionist was asking what the blood tests are for, but I couldn't tell her! She acted like I was being deliberately unhelpful when I said I didn't know and the doctor wouldn't tell me. I have an appointment for Friday. I have to go to work straight afterwards so I won't be able to think about the blood test, which might be a good thing.

[Mumble]

It turns out they don't get any records from my previous GP, just a brief summary of illnesses I've had. Apparently this is normal.

No, they're fobbing you off. They have clinical summaries (essentially what comes up on the computer screen that the GP generally works from) but they also have your set of paper notes (there's a special reinforced shelf labelled 'Mumble' at my surgery for mine... ). Every patient who has at some time registered with an NHS practise will have these, although it can take a while (I think 3 months + is normal) for them to catch up with you when you register at another practise.

 

I have an appointment for Friday. I have to go to work straight afterwards so I won't be able to think about the blood test, which might be a good thing.

You've probably already done this, but are they aware of your fear of blood tests and the reasons why? Being scared of having blood taken, and quite extreme reactions is very common and not just for ASD individuals (although we may face other specific, often sensory, issues). They should be helping you to overcome your fear. Little things you probably already know that help: drink lots of water beforehand - this makes the vein things bigger or something and so easier for them to not miss (), plus if you drink loads and loads your mind will be focused on more pressing matters... , also, try to relax the arm as much as possible, ask them to use a butterfly needle, go through the 17 times table in your head (no matchsticks allowed, you're not Rainman ), and ... don't look!

[Tally]

Thank you for those tips. I shall definitely drink a large glass of water before I head off! No one has ever suggested anything like that before.

 

I always look away because I faint at the sight of blood!

 

My previous GP made sure there were 2 nurses for my blood tests and offered to prescribe some valium, but it turned out this wasn't an option because I didn't have anyone to help me get home afterwards. My current GP has not offered to do any of these things, though she might have done if I had asked.

 

The main reason I don't like blood tests is because the thought of a needle going straight into my vein raises (generally well-managed) OCD/contamination issues. I feel worst during the procedure because I can actually feel the needle right there, and I also keep thinking about how I am going to feel later. It gradually subsides during the day and I am left feeling stupid and thinking I am back to square one with the OCD. I haven't really told the doctor other than saying I am scared of blood tests. There have always been bigger issues to deal with and a fear of something which happens fairly infrequently has never been my priority to raise.