Last reply 6 months ago
So getting a blood test is hard…

Hey everyone
First post! Diagnosed with RRMS in August this year, started Aubagio just over three weeks ago under the full understanding that I need regular blood tests etc.

Anyway, I went along to the walk-in blood service at the MS clinic at the hospital that diagnosed me on Saturday just gone… only to find they didn’t have a form for me, so couldn’t do it! Clerical error I assume, these things happen but my mum was fuming and she’s a bit scary when she’s angry 😂

So I do the sensible thing and try to book in with my GP here in Llandudno, only to be told there are no appointments until the 13th November!
I have the MS nurses calling me tomorrow to discuss, but has anyone else been in this situation while taking Aubagio? What do I do??

Probably pshycho-somatic but I’ve been in pain and feeling generally crappy for the last few days, and obviously now I’m paranoid that the Aubagio is messing with me despite it being fine up until Monday when I started to feel like I’d been ran over, buried and dug up again but that could definitely just be a coincidence.

Anyway, moan over, and I’m currently sat in work wondering if human euthanasia is still illegal in the UK 🙄

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7 months ago

Dear @lauraxie ,

You will need a blood-test request form which tells the phelebotomist (hospital vampire) or the practice nurse at the GP surgery. This form details the tests the doctor wants so the person drawing the blood knows how many and which type of vials to use.

In my experience (25y now) the GP surgery isn’t brilliant for this and if they are then it tends to slow the process down as the results can take more time to get back.

When you speak to the nurse tomorrow bring that up with them first as there is likely to be some sort of protocol.

You have done the common sense thing but common sense is not always the thing that keeps the NHS running, like any large organisation I’m afraid.

Just a possible heads-up: I have learned that ibuprofen can give slightly elevated LFT (liver function test) results. It is my go-to drug when I am feeling a bit sub-par and they were cool about it when I explained.

All of the DMTs prescribed for MS are pretty powerful drugs so it might be making you feel sub-par. It may be a cold, it is so hard to tell. Have you had a flu-jab? Forget the anecdotal stories, the science strongly supports you having one. The GP usually runs a separate clinic for that. MSers are in a higher risk category and the guidelines say we should get it, without question.

Best of luck and let the nurses guide you.


PS: regarding euthanasia, I keep enough in my savings to pay for a one-way ticket to Switzerland if I deem it s all too much. I also belong to Dignitas and have donated my brain and spinal cord to the MS Society research bank.

7 months ago

Dear @dominics I’m jealous that you have enough in the bank account for the trip to Switzerland but can I tell you that they have to have the brain and spinal chord (I’m on the list with the ms society for donation as well) within 24 hrs for itto be of any use. (Check your paperwork cos I might be wrong) so it cold be that the trip to Switzerland is ‘not on’ I can’t see them being able to get the body back and removal to take place within 24 hrs. There do do medical flights for transplant organs around Europe, but I can’t see them doing it for a donation for research. Worth checking out to save possible disappointment😍.?

7 months ago

@grandma I started saving for this specific need quite some time ago! I simply cannot imagine not having the ability or right to make a considered and rational choice. I hope it never comes to, it but it is just another type of insurance, like house or car.

I have asked about the issue you highlight. It is surmountable with prior knowledge. The trickiest ones for the brain bank are those that don’t tell anyone, and when they die it is often too late to respect their wishes as this isn’t known.

Probably a topic for another thread. You can start it as I don’t want to be accused of killing the positive vibe! However, Death and Taxes are unavoidable topics and, regardless of MS, I think we ought to be able to discuss it sensibly and should have covered it off before it is too late. FWIW 😉

7 months ago

Thanks @dominics I’ll be sure to mention the ibuprofen to the nurse when they call, it’s absolutely my preferred drug of choice!
I guess I’m more worried that I haven’t done my duty in having the blood taken and if that’s going to jeopardize anything – I can’t imagine it will but again with the paranoia….
Still very much feeling like a fish out of water i guess!

7 months ago

Hey, don’t panik the MS nurse will provide you a slip to collect straight away and you can continue. I’m amazed at how quickly things are moving for you, which is great. It took a year to finally get my Gilenya started what with sending my appointment to another patient starting the same date and vice versa ha – the joys of a failing NHS. @dominics I wasn’t aware of the brain and spine donations which is good to know – thanks. Good luck all 🙂

7 months ago

@3973stuart – here is the link

@lauraxie – deep breaths, all will be OK. The Nurses are ace and will steer you through it. Regarding ibuprofen and elevated LFT results – that is me. It may not be the same for you. It is just a heads up in case anyone asks. Ibuprofen is so commonplace that it can be forgotten by us, in the midst of everything else.

I do love the idea that you feel duty-bound 😉 I’d argue that it wasn’t explained very well to you. You have done absolutely the right thing popping a question up here.

7 months ago

hi . i have been on this medication and for the first 6 months someone visited me payed for by the aubagio company and when i first got the first presription the blood forms were with it .so ask your ms nurse they will beable to help ?

7 months ago

@andysshere I will! Nothing like that was included in mine when it was delivered but I’ll be sure to mention it when I speak with the nurse tomorrow

7 months ago

Hello @lauraxie, welcome to this elite Shift group. Good grief, I don’t remember when a newbie last triggered a discussion about euthanasia and brain donation! 🙂 Anyways, this is an unfortunate blip with admin; maybe if you’re new to the scene, the various systems aren’t fully in place. I reckon that the anxiety over not having your blood test is making you feel a bit wobbly; I got diagnosed last year and I’ve found it incredible to discover how stress and bother can have an impact on us with this condition. All DMDs have an impact on us; there have been hundreds of posts on here about the why’s and wherefores about whether or not to tread this route. Good luck, you’ll be find, we’ve all been through this newly diagnosed business so you’re in good company here! X

6 months ago

I’m not having the same level of bother as you but my surgery receptionists were making it very difficult for me, they were insisting on a morning appointment for blood tests, which was impossible. I can’t get to the surgery very easily and some weeks I won’t be able to get there at all. But apparently they won’t allow home visits for people who aren’t housebound. After pleading with 2 receptionists and a locum doctor they finally allowed an afternoon appointment. When I walked into the nurses office the first words out of her mouth were, Oh I was just around the corner from your house this morning, I could have done this there! She then went on to explain there was no problem with afternoon blood tests as she has a new centrifuge which keeps the blood moving until the next morning pick up. I asked about the blood tests at home from aubagio but I am too rural for that service. Good luck with it all!

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