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Discussion Starter · #1 ·
Hi Everyone

I am wondering if when running initial tests Rheumatologist would have automatically done a blood test for Lupus.

I had an appointment with Rheumatologist in January, he ordered blood tests, which I won't get the results of until I see him again next week. I did phone to ask but was told if anything was untoward, someone would get in touch, but no one did. He also organized x rays of couple of joints, don't know the results of these either. Also physiotherapy, and the physio hasn't had anything said to her either.

The Rheumatologist thought I just had osteo arthritis, I already have an existing disability which leads to mobility problems so this would make sense, however, over quite a few years I have had these odd problems that don't really get diagnosed, they don't always physically reveal themselves for more than a few days. But am beginning to wonder if there is more to them. As when I get the varying symptoms, I also get a flare up of aches and pains.

One of the symptoms is swollen glands, also migraine headaches. When I was about 17 was quite ill, swollen glands and the most terrible headache have ever experienced. It was years ago, but wasn't taken into hospital, at first assummed I had flu, but it took weeks to recover, for a while I couldn't even sit up in bed properly, so then it was assummed I had glandular fever. By the time they sent me for a blood test, I was practically well and the blood test showed nothing up. Over the years have had flare ups of aches and pains, headaches and more recently swollen glands, feeling fluey sort of thing. My GP tells me its just arthritis, had loads of blood tests that don't show up anything. Before Christmas, in the midst of a flare up, insisted that I go to Rheumatologist which he reluctantly agreed to, but think he thinks I am making a fuss about nothing.

About ten years ago, in the summer, I had a mysterious rash on face, chest and arms, it was quite pronounced and I had it for two or three days. I did see the doctor and he assummed it was an allergy. Can't remember if it was a butterfly shape as so long ago. However, it was after this that the joint pains and migraine really took hold. I have also had the chest pain that is listed in the symptoms on your site, this was first 30 yrs ago and I was advised it was a pulled muscle. About ten years after this it reoccurred and firstly I was told it was indigestion, and then by a chiropracter, a twisted rib.
I do get quite tired but put that down to my disability and working.

This weekend have had the swollen glands again, and a slight headache, but once again pain in not only my joints, but also my muscles, so if you press on them they do hurt, almost as if the pain is in my bones. I am back on the ibuprofen which helps a bit. But don't know if this is my imagination or what. Have you go any ideas.
 

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I sympathize with you on that extremely long wait time for a follow up appointment! That is very long to be left waiting and wondering if anything showed up, and if you should be on some other treatment.

Is your other disability related in some way to lupus/autoimmune/joint pain then? I was a bit confused by that - not knowing what it was. If it is within the realm of autoimmune disease, then chances for another one are increased.

Definitely you have some symptoms of lupus - fatigue, joint paint, achiness, rash (although most here have recurring rashes that last longer than a few days). Certainly after so many years of enduring those symptoms that you needed to be properly investigated. You should be entitled to a copy of the lab results, so I would ask for that at the appointment next week.

However, there are a lot of other things that it could be too. Hopefully you've found a good rheumy who will investigate all the possibilities and come up with some helpful treatment. Stress to the doctor just how much this impacts your daily activities... or impedes them should I say...

Let us know how it goes at the follow up appt. I hope you get some answers and helpful treatment soon.
 

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Discussion Starter · #3 ·
My existing disability would have nothing to do with lupus or an autoimmune disease, it is a mobility problem caused by an accident many years ago, but would probably go along with the joint pains.

However, did have joint pains as a child, before the accident happened. No one in my family thought this unusual as mother has/had joint pains too, father was into sport/football, was quite often injured and achey, so my frequent leg ache didn't seem anyway unusual. More recently I have been told that I hyperextend most of my joints so not sure if this has any bearing on the joint pain I am getting now.

I only got to the Rheumatologist in the first place because I insisted that my GP send me, it frustrates me that they don't really investigate things properly and just "assume", which is probably what has left me to finding out things myself.
 

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Discussion Starter · #4 ·
As if I hadn't already waited long enough for the results, I have just had a letter saying my appointment has been cancelled for Monday and the new date is now two months on.
Telephoned the department, the girl apologized and said they'd had to shut down some clinics. I explained the situation, and expressed my concerns that I am still waiting for blood and x ray results from January. But of course she wasn't able to do anything.
 

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Can you ask your GP to obtain a copy of the results and forward them onto you? Obviously they are available, and I think you deserve to know what was tested, and what was positive/negative so you can be prepared to ask the rheumy at follow up the questions that will naturally arise once you have the results in hand. I'm not sure what country you live in, but almost everyone will provide a copy of the results. Then you'll be prepared to ask questions better at the follow up appointment.
 

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Discussion Starter · #6 ·
Maia;505819 said:
Can you ask your GP to obtain a copy of the results and forward them onto you? Obviously they are available, and I think you deserve to know what was tested, and what was positive/negative so you can be prepared to ask the rheumy at follow up the questions that will naturally arise once you have the results in hand. I'm not sure what country you live in, but almost everyone will provide a copy of the results. Then you'll be prepared to ask questions better at the follow up appointment.

The update on this Maia is that a letter in the post at the end of last week, cancelled my appointment with the Rheumatologist yesterday. To say I was cross is an understatement. My appointment has been delayed for two months ! i don't know if this is usual, I am in the UK.
 

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I would phone and speak to the secretary of the Rhuematologist - tell her how you are feeling and that you are getting more stress adding to the illness and can't really wait another 2 months to see her boss! If that fails go back to your GP and ask them to push for you!

Good luck and hope your symptoms are not to bad today!

Lesley
 

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Seems like cancelled appointments are a way of life in the UK. I think you have two choices - first to phone the secretary of the rheumatology department and do a bit of a moan, and say the same thing - you are waiting for results from January. Ask if she can keep your name and phone number so that if there is a cancellation you can go in at short notice (this technique sometimes works quite well). The other alternative is to go to GP and get them to actively chase up results.
 
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