Tired of waiting on doctors

[Nanoflower]

How long do you wait for a second appointment with a rheumatologist? I collapsed during the summer with a multitude of symptoms and was signed off sick by my GP who said that she thought I might have Lupus. I had my first appointment with a rheumatologist in Bristol (UK) almost three months ago and haven't heard much since.

I had an autoimmune blood panel done at that time and was referred for a spirometry test as well as an EMG. I rang up a few weeks after the blood tests were done and was told that tests take time and that I will be contacted when all the test results had been analyzed. It has been weeks since the last test and I haven't heard anything from the rheumatologist, is this the way it goes?

I haven't been able to go to work for three months and are basically spending my days being sick and wondering when someone will notice. Any advice or reassurance would be much appreciated.

[helloos]

I am not sure about there because I am in Massachusetts. But I would at least call and find out about the tests and see if they are back. Did they tell you that they would call you when the results are in?

For, I get another appointment set up before I leave. The waiting period is just aweful.

I don't see anything wrong in ringing them again since it has been a few weeks.

Hope that your tests come back good but at the same time you can find out what is going on.

Good luck.

[Lily]

Hi,

Thats very unacceptable and frustrating for you having your life hanging on hold all that time waiting for answers and solutions. Many of us have been there, but its not an ideal situation especially when it is affecting other aspects of your life like your ability to go to work!

Hopefully someone with more local knowledge will come along, I'm in Australia and my appointment is usually set up like Paula's is, arranged straight after my consult on the same day.

I think if that was your first appointment then its reasonable to assume that there would be a follow-up to discuss findings? However my first appt with my Lupus doc he just said he'd ring and let me know how the tests turned out, which he did. At the time my ANA was negative but he turned up a few other inconsequential things. I felt like I'd been discharged by him, but not 'dismissed' as far as my health went. However he did have to ring again unexpectedly when one of my later results came back showing a problem and I had to have a follow-up. There were no firm answers on that 2nd appt. but he did fix one aspect of an immune problem.

Things continued on and symptoms escalated and I was free to make another appt. my GP said. So thats what I did. The rest was history, he realised it wasnt going away and from there on scheduled regular appt. and kept checking my bloods and urine etc. until diagnosis some 2 1/2 yrs later.

Like Paula I dont think its out of order that you ring again and ask them whats going on? You have been left in limbo, you arent able to work and you need to find out what he's turned up if anything. Even if he hasnt turned up anything for now, he needs to tell you where to go from here. Thats a docs responsibility and he needs to fulfil his obligation to you.

((((((((Nano)))))))

love
Lily

[Nanoflower]

Thank you for your input. I called the hospital once a week the first three weeks and was told not to call again, they would contact me when all the test results are in. The test results were forwarded weeks ago, and since all this is happening at the same hospital with departments a few hundred metres from each other, I can't see that it could take weeks to get there.

I'm nearly thirty and I am still petrified of doctors. I grew up chronically ill with kidney problems due to IgAN, Raynaud's, migraines, joint inflammation etc. and the experience was never pleasant. The nephrologist talked about a kidney transplants in a few years, the dermatologist wanted to chop my fingers off because I had gangrene and so I left my medical history, prescription medication and doctor's visits in South Africa when I moved to the U.K. five years ago. I managed to cope for a few years here without help, but being unable to breathe at all in May introduced me to my GP who decided within months that something was seriously wrong. It wasn't the first time lupus was mentioned either.

I still find it difficult to talk to doctors which perpetuates the unpleasantness of appointments. It also means I go to the doctor when I'm better because I can't cope with the stress when I am really ill. So the doctor's here haven't seen any joint swelling or inflammation, my butterfly rash or photosensitivity or a positive ANA. Stupid, I know, but I'm working on it. I'll call the hospital again on Monday morning and be a little more assertive.