LUPUS UK
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Rapid decline in ability - do I go to my GP?

Hi,

I've posted here quite a lot since my UCTD diagnosis. So thanks for all the support. Now I have another question.

I had my last rheumatology appointment last week. The doctor said he suspects I have myositis in my large muscles especially my thighs. He's ordered a MRI and I may start methotrexate depending on the results. I'm waiting on this appointment for the MRI at the moment and I have no idea as to the time frame. My next rheumatology appointment isn't for 4 months though.

The problem is my thigh muscles have become so weak I cannot walk or stand at all at the moment.

Do I go to my GP about this? I am clueless as regards to who I see or contact about my health now. Up until Christmas I had never gone to my GP about anything other than contraception so I feel very strange seeing them at all. I feel like I'll be wasting there time because I don't really know what they can do that isn't already being done?

Thanks.

12 Replies
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I'd phone someone on your rheumatology team today...you can't continue like this .....you need to get some medical advice ASAP...if you can't stand or walk you need help now.

If you can't get to speak to your rheumy team I'd call 111 to see if they can get you an emergency appointment with the right person. They do have qualified clinicians to speak to after the initial person you speak to asks you a lot of what appear to be daft questions!

For example, I had a massive nose bleed.....after 40 mins I called 111 as it was getting worse, & the first thing the receptionist said was could I not go to A&E....Noooooooo........not with blood pumping all over the floor I couldn't! You have to be patient but firm & get across that you cannot walk & really need some help.

I do hope you get some assistance today.

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Luckily my health has improved slightly and I can walk a few metres now. I have a Dr app booked for the end of the week and I am off work until then anyway so I'll rest and if things get bad again I'll call 111 for advice. Thanks!

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Hello eescvc

As you say, the temptation is to assume that once a specialist rheumy is involved, your GP cannot add much to enhance your care. Often, that's how GPs operate - letters from your rheumy will be quickly scanned for action points only and then filed.

When things are stable and generally OK, this isn't a problem, but when things are deteriorating and/or you are struggling, you need them to be a lot more active. For example, they might consider a further referral e.g. for a neurological assessment, or blood tests that your rheumy has overlooked or has not considered.

In your circumstances, 4 months is a long time to wait without direct medical support. I'd strongly recommend you see your GP. At the very least, they will look through your recent notes/reports and be assured that all that could be done is being done. In view of your incapacity, I would expect them to be concerned, and that they would positively want to see you in any case.

x

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Thanks, I have an app booked now, albeit for Friday. Still better than 4 months!

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I agree with the other responses - I think you need to phone your GP and also rheumatology ASAP - and if you are unable to get to see them then please ask for an urgent phone consultation and otherwise contact 111 and ask them what to do about your lack of mobility.

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Thanks, booked an appointment for Friday. My condition isn't as severe as earlier and I can walk a few metres now but I will contact 111 if it declines again. Hate making a fuss!

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Being only able to walk a few metres isn’t making a fuss!! Friday seems a bit far off so please do phone them again for urgent on the day appointment if things worsen.

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I agree with Twitchytoes, whisperit and Agedcrone. You need to escalate your downturn, contact your rheumatologist and GP they should work together. This needs to be looked at ASAP cos things change so fast.

Good luck and don’t get put off with receptionists.

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Booked GP appointment (My Drs surgery receptionists are actually lovely! Mad I know!) and will contact my rheumatologist tomorrow (can't face it today) - although I don't actually know who the hell my specific rheumy is. All 3 times I have gone I've been seen by a different Dr!

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Hi eescvc,

Thx for reply and that you are contacting experts, anothermember is right too about A&E when things get really bad. There is a rheumatologist nurse attached to most consultants, you can always try them to get through to the right expert.

Good luck and keep pushing to get help.

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I should think GP would advise you to go to Emergency. Unable to walk suddenly is an emergency. How on earth your Rheumatologist expected you hold on for another FOUR MONTHS? Sorry, I was crying out loud.

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The unable to walk comes and goes as the weakness becomes more severe. When I wrote this I needed help getting out of bed and being carried to toilet but I can now walk a few metres by myself. The weakness slowly fades and then very tight seized muscles are the current problem. I've booked a GP appointment for Friday morning, not ideal, but was the soonest they had. Also turns out my GP retired last week so I'm not even sure my latest letter from my Rheumatologist about the MRI request and the muscle problems has even been read by anyone yet.

Fortunately I'm off work for the rest of the week so can rest in the mean time. Hoping a very hot bath tonight and a few days of rest will help anyway. If I am unable to walk/stand again in the time until the appointment I will go to A&E I think.

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