Hi All,
Just thought I would catch you all up on whats happening with me, I have been trying to get a referral to a rheumy since last August (2008). The first GP forgot, I only found this out in December when I went to see why I had not heard anything. Next GP took more blood tests and also told me that I could not have sjogren's as all my bloods were clear. I explained that there are a percentage of people with whom it does not show up. Went back in January for yet another symptom and I was happy to find out that this GP had done some investigating and now knew some more about sjs. Still nothing from Hospital, so I was planning a vacation and called hospital to make sure that it was not going to be at the same time as my first appointment with rheumy. I was then told that I had cancelled my appointment (????) had to wait 2 weeks to see GP and he had no idea what was going on.
I am having major problems down below, so this GP suggested I make and appointment with one of the female gps and he would try and find out what was happening with hospital. yet another 2-3 weeks waiting on an appointment (I can't leave work in the middle of the day as I would not be able to park when I get back, work would be annoyed if I take anymore 1/2 day's for medical appointments) Saw the Female GP and had the worst internal examine I have ever had, she says that I need a referral to gynae. (I thought she would do this) She also said I needed to have an chest x-ray for sarcoidosis. Did this the next week and then had to wait 10 days for result to get to GP.
This was just before my vacation, so I was unable to go before. made an appointment for my return. The first thing the GP said was "Are you better now?" Yep no treatment and I'm better. The funny thing is that lo and behold a letter has now appeared dated 19th January 2009 (in may 2009) saying that the rheumy does not think I can have primary sjs and that it must be secondary and he wants me to have more bloods taken. also they had not referred me to Gynae.
I am not holding out much hope to see anyone, and even if I do see the rheumy he is also of the belief that without positive rheumatoid factor you can't have sjs.
I think I am going to give up with getting a diagnosis, I just want them to treat my symptoms so that I can get a little bit of my life back.
Sorry for the massive rant. I have been bottling this up. I just kept thinking that "this week I'll get my appointment" ha ha
Trudie
I can understand exactly how you feel. Doctors can be so frustrating. I sometimes think they forget about who they are treating--bet they would not be patient if they were in our shoes. Rant on..it helps to let it out. sending you a big HUG! Redetha
That is a load of crap, my daughter Jenna has been diagnosed by a pediatric rhumy as having sjs and her rf test was negative. You need to find a new gp and get a good Rhumy.
Hi Trudie
This is awful. No wonder you're feeling so angry. It's just not acceptable for a GP to forget to write a letter to get you a referral. It's also wrong for a GP to do an internal exam that's your 'worst ever'. You poor thing!
Is your GP practice a large practice? Are the doctors there changing all the time? They should have procedures set up so that patients are followed up, with either a named GP per patient or specialist GPs. Is it worth writing to the practice manager to ask for an explanation for the delayed appointments and for the letter which suddenly appeared? I got so fed up with being fobbed off by the receptionists that I asked my GP to put a note on my file so when I phone and my name comes up on the computer I'm put straight through to a doctor, no delays.
You definitely need a new rheumatologist, as Jonnell says. I think what's happening to you is a worldwide phenomenon, nothing to do with the NHS. It's just that health care systems seem to be organised for the benefit of the providers, not those in need. Where in the UK are you? Maybe someone here can recommend one? Have you looked at the post about SjS World people in the UK? I'm in Brighton and can recommend mine if that's any help!
Until someone's been there for a while I don't think they can understand what a lonely and troubling place limboland can be. I hope none of your doctors ever have to experience it, but maybe they'd learn something if they did!
Thinking of you - Chickpea
Thank-you so much everyone, you guys are always there when we need someone to talk to .
I am in Scotland (with forth valley PCT) and the local private hospital uses the same rheumy. Was thinking of going private to see someone.
Chickpea, the doc who did the internal exam was great, I just have a lot of pain day to day, she was trying her best to try and diagnose something to give me some treatment.
I do have a large GP practice, and the one I have been seeing is apparently the best they have. He does seem to actually be interested. Some of the other GPs in the practice are really bad. My GP says that 99.9% he is convinced that it is SJS and that he just needs to get someone else to believe him.
Hi Trudie :)
Its difficult to work out where the mistake occurred - the GPs, the hospital or the post office!
I totally understand your frustration. I was referred to a neurologist once, when waiting lists are longer than they are now, and waited about 11 months - heard nothing and got back to the GP who just said I'd been referred. I checked up with whom. I then phoned his secretary who said my name wasn'r on a waiting list and they'd had no letter. I went back to my GP and asked him to write a letter there and then. He gave it to me and I hand delivered it to the neuro's secretary and asked for a signed receipt. The appointment wasn't long after that.
Now I always check with secretaries if I don't hear anything within a few weeks. In England they sometimes send a letter out pretty quickly telling you roughly when to expect an appointment but the letter for it comes nearer the time.
I don't understand why you weren't referred to the gynaecologist unless you were meant to make the appointment at reception. Again - I don't know what is national now and what is English/Scottish. In England we now have the right to be treated at the hospital of our choice so when I needed an ENT appointment I had to go from the GPs office to reception to make that. Is it the same with you?
I have a dx and my bloodwork is only mildly positive for lupus and Hashimoto's thyroiditis. No Rf factor. I got the dx on symptoms because they are more SjS than lupus.
I do hope you see who you need to soon and get some treatment.
Take care - Scottie :)
I am sending you big hugs too Bonnie! I am in a similar situation right now, and feel that the anxiety that all this creates is doing far more damage than the disease itself. You deserve better dear.
Kellie
Bonnie,
So sorry to hear of this nightmare in health care system. I complain about a two month wait here in U.S. I guess I should count my lucky stars.
Karin
Heres something I don't understand, why do you have to see one doctor, who can't help you, so you can see a specialist can? I was so happy when our HMO didn't require a referral from PCP. Someone must have figured out that this was costing them millions.
Sounds like the same system we have in the States, except the insurance companies tell your doctor how to treat you and some folks pay as much for health insurance as their mortgage payment, plus deductibles and co-pays and 50 million people have no insurance at all, yikes :o.
all I can think is dannnnngggggggggggggggggggggggg.
what a fliiping run around!
Because of what I read on here, I have asked my doctor to refer me to a rheumy (privately) who knows about Sjogrens. I see him tomorrow.
I wish you luck in getting seen by someone who knows what they are doing, and am so sorry you have been given such a run around. It's not good enough when you are already ill, to be treated like this. xx
Quote from: Bonnie on May 29, 2009, 07:11:17 AM
the rheumy does not think I can have primary sjs and that it must be secondary and he wants me to have more bloods taken.
Trudie,
Did your rheumy say what he thinks the Sjogrens is secondary to? What your primary diagnosis would be?
Hi Trudie,
dbab asked what I was thinking too. What does he think it's secondary to?
Patze
Hi all,
Scottie I think it must be a Scotland/England thing, my GPS do all the referrals. The only easy appoinment has been for a chest x-ray, which is drop in. We don't have another Hospital which we can easily be reffered to, a few years ago they merged all the local hospitals and the same staff work at each on different days.
Dbab, I have been tested already for lupus, RA, MS, thyroid and a whole host of other stuff, I have been x-rayed for Sarcoidosis (negative) and now they want my blood tested for this.
I was also thinking of making a private appoinment, but the local private hospital uses the same rheumy? I think if this is the case I am going to wait until I get a free appointment, rather than paying to see someone who is not a sjs expert.
I know how you feel....my daughter has been running around with a tumor in her brain for the past
4 months and none of these doctors (up to this point ) have done anything to help her...thank
goodness she has found a Nero that has respect for his profession and is getting the ball moving.
Now she has a good Rheumy and Nero....maybe they can get stuff done before its to late...at the
rate the others were going she could have just laid down and died for all they cared. I will keep
you in my thoughts and prayers. So i guess what I'm saying is don't give up.
JJ
JJ,
This is terrible, you would like to think that at any sign of a tumour, your daughter would be seen by a specialist as soon as possible. My prayers are with you and your family. Thanks for your thoughts.
Please know that we will all be thinking of you.
Trudie
Hi JJ,
I'm so sorry to hear about your daughter, wow, four months? That's amazing! Just, wow.
What are the doctors going to do for your daughter now?
Please pass her my best and I'll keep her in my thoughts and prayers -
Patze
So sorry to hear about your daughter JJ - hope she gets the very best treatment now.
Bonnie - it all sounds so hideously familiar - the endless mix ups with appointments, the not being listened to, the not being able to choose which doctor you want to see, the indifference and lack of interest, the over reliance on unreliable tests rather than looking at the whole clinical picture....and in the meantime you lose whole chunks of your life because you feel so dreadful. Grr!
I have a diagnosis of SJS on the basis only of high ANA levels - I don't have antibodies specific for Sjogren's - my rheumy diagnosed on the clinical symptoms (bless him!) so don't give up.
love
Agatha
Thanks all, I am trying to be positive and hopefully soon I will get to see someone. Just trying to get on with living as much as possible.