[map]

Hello everyone, I have stood on the sideline for ages not really knowing what to post but here goes. A couple of years ago I started to get what I thought were hot flashes followed by a chronic calf pain which felt like a pulled muscle. I went through a phase of ankles giving way and stumbling and falling over. I put it down to menopause and started HRT. After one glorious week of feeling well the 'flashes' and calf pain returned. A few diff hormones were tried but symptoms stubbornly remained.

Not long after this my son was severely injured in a car crash and was hospitalised for weeks, happily after a long haul he recovered. It was after this things deteriorated, The calf pain was replaced by severe neck pain, weakness, fleeting joint pains, constant exhaustion and a faint rash across the cheeks. My GP ran some blood tests and on finding CRP of 13 referred me to see a rheumy who admitted me to hospital with suspected SLE. I'm not sure what all the tests results were but I do know antibodies were absent. I was given a pred shot and put onto Plaquenil. Things greatly improved for quite a few months until Dec when joint pains gradually returned plus new symptoms of transient dry eyes and mouth and CRP rose to 23. In spite of these problems (and also discovering I had picked up MRSA in previous admission), in January I had a rotator cuff repair at another hospital and things have deteriorated ever since.

My appointment wasn't until April so GP tried (in vain)to get the appointment brought forward. By the time original appointment came round in early April CRP was 39 and I felt very poorly. On being seen rheumy said things were out of control and put me on low dose pred all being well start metho in 6 weeks. Was also sent me for xrays and lots of blood tests and The receptionist said the next appointment would be posted as the computer is unable to handle appointments below a certain interval - incidentally, whatever interval rheumy sets the computer doubles them.

As things stand, currently no appointment arrived and discovered today none has been made nor do they have any available for months. On top of feeling increasingly unwell I do not feel confident being treated under such a haphazard appointment system (and dirty hospital). I am seeing my GP tomorrow who is very supportive and wonder if I should ask to be referred to a diff hospital? Or am I being unreasonable. Sorry for the long rant I feel so cheesed off at the moment.

 

[Joandublin]

Hi Map

Welcome to the Forum. I dont have a lot of time right this minute as Im rushing off to work but I saw your post and wanted to give a quick reply.

Most definitely seek another referral. You are certainly not being unreasonable. Remember, this is your health and you deserve the best possible care and it sounds like you are not getting it from this hospital. It sounds like your current Rheumy might just be bad for your health Its great that you have a good GP. That will be crucial to you as you go forward.

Stick around here and you will get good advice from experienced patients on how to become a better partner in your health care.

Sorry this is short but I have to rush. Welcome again and good luck at the GP's

Luv n stuff
Joan:rose:

 

[Katharine]

Hello and welcome

That does sound a rather haphazard system and I think I too would be looking for a referral elsewhere. You are obviously not well for the moment and closer follow up is important at a time like that.

bye for now,
Katharine

 

[greenhaggis]

Hi Map and welcome,

Sounds like youve had a very stressful few years and its not easing!

I would definately go back to GP and ask to go somewhere else, hopefully they can set it in motion! If they say it can't be done, then write a letter to the GP who can pass it to the PCT defending your case for a 2nd referral! I did this and managed to see another specialist!

Take care!

Lesley

 

[Clare.T]

Welcome to the forum Map

You are most definitely not being unreasonable ! We often have to be very persistant and absolutely determined to get the best care available whatever country we live in or healthcare system we have to rely on. Remember that it is your life that is being ruined by unacceptable standards.

You shouldn't be hung out to dry on Prednisone. How much are you taking by the way. There are quite a few points that are rather puzzling to me, for example CPR is quite often not raised with lupus: a high sed rate with normal CPR is more indicative of lupus, see the St Thomas' "Alternative Criteria" list. Have a look through the ACR Criteria list too to see if you can identify with anything on those lists although without blood test results that will be more difficult.
If there were no antibodies present, on what basis was the diagnosis of lupus made ? It is hard to get diagnosed with lupus in the absence of any antibodies or specific symptoms like skin or kidney disease. That's because the typical symptoms can have many causes.

Another question is why were you not started on Plaquenil at the same time as the Prednisone. Once you had got used to that, Methotrexate could have been added and you would have a better basis of disease modifying medication. The Plaquenil takes several months to work even up to a year for the full effect and I think Methotrexate works faster but you would have got some Plaquenil under your belt and might have needed less Methotrexate.
There's also the question of anti inflammatory drugs/pain killers that most people need.


Perhaps you can access your previous records with notes of the blood tests. If you are in the UK the specialist should be sending test results to your GP and you have the right to have copies of them. If that's not happened it would be another ground for serious complaint.
Secretarial errors and poor communication are fairly common certainly in the UK but it is unacceptable for a doctor to tell you to come back in six weeks to start a very important stage of treatment then 7 weeks later not even having an appointment in the offing and them not caring enough to make one. It suggests the specialist doesn't have a clue how poorly the department is functioning. If your GP is a good'un he will surely understand that you are in a bad situation and intervene forcefully with them as necessary, to get blood test results sent to him and insist on an appointment being made ASAP for you.

However I also think you would do well to seek a further referral at the same time. The GP might have an opinion if this is typical for this hospital or you have been very unfortunate- he's bound to have other patients with rheumy diseases even if there are none with lupus.

If you are in the UK you would probably be better off referred out of your area, especially if there isn't any choice of different hospital and no lupus specialists locally. Getting treated at the same hospital isn't usually satisfactory as there's no guarantee you will see the same doc every time and underlings won't go over the head of their bosses.
The majority of rheumatologists do not specialise in lupus which is often necessary in tricky cases. If you can possibly go privately you will get an appointment very soon but you might have a good two month wait on the NHS. I think it is worthwhile doing all you can to go privately as the expense and hassle often save lots of trouble in the long run.

Meanwhile your GP can be doing all the relevant tests within his power. Complete blood count, ESR/CRP, ANA and RF, metabolics, liver and kidney function and urine should be no problem to get done although some of the results might be skewed by being on Prednisone. Some GP's can apparently get antibody tests done too. You can prepare by drawing up a list of current symptoms and health history leaving nothing out and a list of recent and current medications. There is a list of usual tests on the information section of this site along with symptoms and diagnosis information.

Please ask for any further help - there is no "ranting" here and no question too "silly". We'll do our best to help you access the quality of health care to which you are entitled and support you all the way with information and encouragement.

Keep in touch !


Clare

 

[LolaLola]

Hello Map,
You have been given good advice so I just wanted to welcome you, and say I will be thinking of you. Please let us know.
x Lola

 

[Becks]

Hi Map,

Welcome!

I don't really have any advice but I do know how you feel. I went through a stage of my appointment being moved every time I got one and at one stage the same appointment was moved 4 times before I got to see the rheumy!

Maybe we have the same hospital?! :lol:

I spoke to the rheumy himself when I finally got to see him and explained how I felt and he made a note of it and i haven't been moved since - touch wood!

Good luck and let us know how you get on.