The Lupus Forum banner
Cancel

Lost!

685 Views 19 Replies 16 Participants Last post by  marymackay, 
M
:(Hi Everyone

Hope I've put this in the right forum?

As you're probably aware I'm having problems with docs at the moment ( thread in tests and procedures!)

Just need to ask 'what do I do next?' Seen GP today and explained that I don't think the diagnosis by a doctor whom I've never seen that as said I have 'complex regional pain syndrome is correct. Things just don't fit with that. I tried talking to GP but he was very off hand with me? I asked if they think that it's all in my head as that's what he seemed to be implying. I was so shooked when he said YES :eek:

As this GP only said a couple of weeks ago that they'd left me long enough without treatment and that I needed something at least for the signs that they can clearly see let alone the symptoms which I now find out that they don't believe. I feel so utterly let down by the medical proffesion. All along I've not wanted to be poorly but for them to say it's in my head is bizarre. I'm 29 years old ( 30 in 2 weeks) not that I'm counting and I feel terrible to say the least. I so hoped that things could have changed and that I could start my 30's off well but now I'm baffled.
GP all along thought it was vasculitis but because no bloods other than high RF and low lymphocytes which apparently doesn't mean anything, show anything else then it's all got to be in my head. I asked that is it possible that there is something going on and at the moment bloods aren't showing but he simply said that I'd have to be one of the unlucky ones of which they don't believe that I am.

From what I've read about vasculitis it is all so familiar other than my blood tests although it does mention a raise in the RF!

I don't want to be ill or labeled with anything but I know my own body. I don't know what to do. I'm afraid I got quite angry with GP as he's truly thrown me for six.

How can I get better and who's going to listen now they all think I'm mad?

Asked GP about vascular clinic appointment and he merely laughed. He said that they wouldn't want to see me as he can feel a pulse and that the problems with my hands are nothing. Nothing that's why I ended up in A & E several months ago with my right hand completely blue and without movement or feeling in it. It was there they said that they wanted me to go to a vascular clinic but as it turned out they forgot to refer me.:(

Also asked GP about dermatologist appointment that was mentioned to me from locum rheumy on last visit and he said that it's pointless and that I don't need to go as they couldn't do anything? Also having loads of sinus problems again but in his opinion I haven't. The pain in my face, ears and forehead is much worse than 4 years ago when they found I had fluid in my cheek but GP said that I would look different in the face. I explained this is exactly how it was back then and they found fluid in my left cheek so I had to go into hospital for it draining which when I came round from that I felt terrible and it never even worked as I've continued to get the pain. But he was adamant that I don't have sinus problems. I asked about the fluid in my middle ear that he saw last week and he just dismissed it and said that everythings ok.

HELP what do I do next. Do I just try to carry on and see how things pan out.


:sadwalk:

Thanks for letting me get this off my chest.
Mrs M xx
See less See more
Reply
Save
Like
1 - 20 of 20 Posts
K
Oh MY!!!!!

I am at a loss for words :mad:

How can your GP be like that? I'm sorry I just don't know what to say and can't even be constructive as I don't know the system.

Here you just ring up and ask for an appointment with the doc you want to see, a referral isn't necessary. I have to say that at times it is very useful even if I'm sure the system must be abused at times too.

all I can do is send hugs,
:grouphug2:

Katharine
Reply
Save
Like
G
I'm so very sorry that the appointment went so wrong for you emotionally!

Looks like its definately time to take that offer up of the weeks investigations at the hospital! GP are not qualified to make specialist diagnoses - please remember that!

Take care!

Lesley
Reply
Save
Like
K
Ditto what green haggis said and I am sorry too that your appt. went badly.

I think you need to seek out another GP........in my humble opinion.:wink2:
Reply
Save
Like
M
That would be awful to go through! I can imagine what it would be like as I think they thought it was all in my head too when I started getting constantly sick all the time (while off Plaquenil at doctor's insistence for breastfeeding) and my lupus symptoms returned full force plus others....

Are you able to go private? Have you taken pictures of the visible signs like that hand incident and other things? I think it's time to gather up all the evidence you have (blood test results that are abnormal in particular, pictures, etc.) and go to someone who has a very good reputation for dealing with autoimmune disorders and/or vascular problems.

Don't give up - that's just not an option. Your daughter and family need you to get the help/treatment you deserve to get better.
Reply
Save
Like
K
Hi! I feel so badly for you .... I went through the same thing last year with a GP. We actually ended up having a screaming fit at each other before I left his office.

I ended up having an inferior ventricular infarct at the time and my iron had bottomed out from all the inflammation. Needless to say It has taken me over a year but I have FINALLY found my way to a good lupus specialist and my new GP acknowledges right up front that he has no idea how to treat me and works well with my rheumatologist.

I'm telling you this because it was a fight the entire way .... and sometimes we need to to fight for our rights as patients and as women. I have actually had a doctor tell me its all in my head because I'm old enough to be going through menopause. Didn't bother to check any labs or urine or listen to my symptoms, just decided right off the bat that that is the problem.

Don't give up on yourself ... your worth it ... some days you won't feel like you have the energy to stick up for yourself ... but you have to ... luckily I had a good friend who went along with me and spoke up when I just couldn't anymore.

There is hope, there is a doctor out there somewhere that can and will listen to every word you say and put the puzzle pieces together. When he does, you will feel so relieved that you will finally be getting treated for all your aches, pains, and odd symptoms.

I wish you all the luck in the world on this quest and some energy for the times you need to find just a wee bit more!

Hugs!!!

Kim

MCTD (SLE,polymyositis, scleroderma, RA) Raynauds, Atrial septal aneurysm.
See less See more
Reply
Save
Like
M
Wow you all are such amazing caring people I really am thankful for all your kind words and support.

Today I've woke and after such an emotional day yesterday I feel that there is no way I am just going to be left. I don't know how I will do this but when I do get to the bottom of things boy will they know about it :grrr:

I can't afford to go private so looks like this will be a hard slog but with support of my family and you guys I will make it. Hope you don't mind if I keep poping back and bugging you:lol:

I have taken many pictures of fingers and toe which seems to be building up a little album and this is all from just Feb this year. Probably have more to add as I've got a couple new lesions on my fingers but as I said to hubby last night maybe it's only me that can see them ah! ah!
GP also said yesterday to keep taking photos but like I said nobody seems bothered by them although locum Rheumy did ask if she could keep them on last visit which was fine as I run another copy off.

You are all so inspirational with how you've overcome problems along the way and I will really try to keep my chin up and get to the bottom of things. Will let you know as and when things pop up.

Take care Mrs M ;)
See less See more
Reply
Save
Like
B
Don't give up, and keep hounding your Drs. It took 4 years for me to get them to listen to me and at one point I was seeing one or another Dr from my surgery every week! My notes said that I was probably putting it on because my bloods were nearly always ok. I'd had a blood clot on my lung in 2002 which they managed to misdiagnose and if my hubby hadn't taken me to A&E I'd be dead now, 9 days in hospital and 6 months to recover... Then when I was pregnant with DS I was really poorly and thats when they decided that I wasn't putting it all on, duh. Anyway since then I've been diagnosed with UCTD last November and on Plaquenil and lots of other meds. So all I can say is that you must believe in yourself and don't let them bully you. If the Dr you normally see is unhelpful then ask to see someone else. It really is all down to you as the Dr's are probably like mine and unless it's a straight forward diagnosis they have no idea!! Good Luck and gentle hugs...
Reply
Save
Like
C
Hello Mrs M

I am so sorry about your terrible experience. This is beyond belief. This is the same GP who told you that there is no denying the signs whatever anybody thinks about the symptoms you complain of ? ("Signs" means what is obvious and proven, objective indisputable things, as opposed to what the patient reports)

Here is a list I have made from your previous posts. I might have missed something

Blood work:

Anti-Ro
High RF
Low lymphocytes

Livedo
Nail infarcts + black toes if that is separate
"Chilblains"
"Nodules" on fingers - is that separate from the chilblains, hard subcutaneous lumps ?
IBS or similar symptoms, blood in stool.
(Did you mention) Visibly swollen joints

Family history: Raynaud's, diabetes ( Type1 or 2?), arthritis ( rheumatoid?) thyroid(autoimmune?)
This is the same doc who thought you should be put on Pred only a couple of weeks ago?

If you haven't done so already I suggest composing a very formal unemotional letter letting the facts speak for themselves, setting out everything that has happened with dates when possible with copies of photos and all the documentary evidence. You have the right to your medical records of course.
Make copies of everything of course.
I haven't thought more about exactly what to do, apart from sending it by recorded delivery to the GP and the practice manager asking for their comments " because you want to be quite sure there have been no misunderstandings ". Maybe to the rheumatologist you are supposed to be seeing in a few weeks maybe the PCT.

I know for a fact that biopsy can show vasculitis. I think the 'pulse' remark is very odd - doesn't everybody have a pulse unless they are dead?

Maybe the thing is to insist on a referral out, either to St Thomas or Newcastle.
If you can possibly get the money together I would certainly suggest the London Lupus Centre. Perhaps you have friends and family who would chip in?
And of course ask for an urgent psychiatric referral - seriously! It wouldn't be the first time seeing an expert comes in very useful to kick the all in the mind theory out of the window.

I hope this terrible event has given you the courage and conviction of what you have been going through too long already - no more of this sorry and apologies and other people worse off line of talk.

Many Hugs

Clare
See less See more
Reply
Save
Like
L
Oh this is terrible mrs M i think Clare gives good advice, this can't go on
please tell us how thing go



Good luck Lin xxxxxx
Reply
Save
Like
M
I can sympathise as I spent 4 years trying to get my consultant to believe the pain and fatige I was suffering-he insisted it was just raynauds and i should wear gloves and eat more curries!! i was considering going private in desperation-my mum offered to pay- but luckily my doc is fab and he referred me to another hospital who got me sorted
SO DO NOT PUT UP WITH IT!!! You have every right to change your doctors - are there other (better?!) surgeries local?
Good luck
Love Rachel
ps I am 30 too!
Reply
Save
Like
R
sorry you're having such a bad time - sounds awful.

Vascular stuff i do know about from personal experience and can comment on one thing

doesn't everybody have a pulse unless they are dead?
Click to expand...
Actually you can loose a pulse in part of your body and be very much alive, it has happened to me. I lost a pulse in my arm when the blood flow was being blocked by a narrowed artery (lupus again, plus they found a blood clot around the narrowing).

It was exceptionally painful and they hospitalised me imediately and put me on a morphine drip plus a heparin pump while they treated it. It was a real mission.

raglet
Reply
Save
Like
H
Oh, Mrs. M, I have gone thru the same things that you are now going thru, I got patted on my little head and told not to worry, that it wouldjust dissapear so many
times, that I now have a Flat head!!!Lupus is frustrating to get someone to understand,and diagnose, and it is a very long road. But, I will promise you this much, if you keep comming here to blow off steam,or ask questions, or just to cry on someones shoulder, you will get thru this, why? because we will help you and see to
it that we have taken your worries away and left you with a smile on your face. luv
Reply
Save
Like
M
Hi Guys!

Do you know I actually feel ready to fight now and much more positive and less weepy. It's time I stepped up as this is all happening to me and not them.

Spoke over phone to Rheumy department and the secretary actually put me onto a member of the rheumy team! She said that RF at 38 is classed as weak positive and this would be taken into consideration only if I have signs and symptoms of which I have. Also seeing same locum Rheumy as last time on the 19th september so we shall see what she thinks to blood results as she's the one that ordered them. She also said that she wanted to keep a close eye on me so she obviously saw something?

Clare. T your reply is spot on:

First Rheumy appointment was when he noticed 'quite marked livedo in the distal parts of her leg' and 'what looked like chilblains in the distal parts of her toe and fingers'.He also wrote ' There are some features of an urticarial vasulitis type problem but also other features which may suggest features more in keeping with SLE or an evolving connective tissue disorder'.

I get 2 different types of nodules/rashes - some start as small red hard lumps that get bigger in size and stay for a week plus. I also get what starts like a small blister and then others appear and they become bigger over days and spread and join together. They end up looking as though I've drawn around the edges with a red pen ( all of these are documented and photos to show). Sometimes these dry my fingers out and they also leave my skin with a purple tinge, especially if the hands become cold or hot which they often do. I just can't control the temperature of my hands, feet or nose??? That reminds me Rachel the docs also told me to wear gloves and socks but this is a nightmare. When cold I pop on the socks and gloves but soon become bubbling hot and then they begin to itch with the gloves etc.. Can't seem to win Ah! Ah!

Just to say Clare diabetes, thyroid problems and arthritis run through mums side of family including my mum. Mum as like her family are all insulin dependant.( can't remember if that's type 1 or 2? )

Clare about the swollen joints, although I feel my knees are swollen at times docs have never seen this. Also hands and feet early on this summer if I was to sit out they would swell. Yes just forgot GP clearly saw my swollen eye not so long ago as he prescribed antibiotics but they didn't work. Last visit to locum Rheumy she also saw my swollen fingers ( sausage fingers as was once said to me ) and my swollen bottom lip which is the reason she sent me for bloods!

Oh no I've gone on for far too long again. :lol: Hope you are all doing well and todays a good dayfor you amazing people.

Mrs M x
See less See more
Reply
Save
Like
M
Hi Guys just thought I'd pop by and say :hello:

Hope you are all well and in not too much pain!

Just wanted to say that my appointment on the 19th september well there's a little twist. The Locum Rheumy that saw me last time and who I'm seeing this time is actually on the team of rheumatologists at the Connective Tissue Disorder Clinic in the next town to me? Could it be that my previous Rheumy's passed me on as he knows there's something going on as they keep saying and because it's her field she could well be able to help.

I feel a little better knowing that she knows about such issues and she said herself that things are going on with me and that they need to keep a close eye on me. I so hope that next appointment she will give me some info on what's actually happening.

Also just to say things haven't been great since I couldn't get out of bed over a week ago.
I've got alot of pain in my hands, feet and hips. I also had a strange thing happen the other night:hehe:
My big toe earlier in the day had got sore and painful along with some redness. Then early evening on my other leg around my ankle and lower leg it started to swell slightly and became really red and the heat was amazing.No idea what this was but left me the next day aching and my knee on the same leg was burning and aching.

Any ideas????????

Take care everyone:)

Mrs M x


PS Halfpint just to say I've just reread all the replies to this thread and cannot remember reading yours last time round. It was really touching and so much appreciated. Thankyou for your kind words. xx
See less See more
Reply
Save
Like
C
Hi Mrs M,
I trulay cannot believe what you have had to endure, especially with that last appt with your gp.:(
With your signs symptoms and blood results you'd have to be damn stupid not to see that you are developing a connective tissue disease. :mad: :(
You poor thing.
The good thing is atleast the rheumy you have seen seems to be on the ball.
I would definately change to a new gp preferrably beofre your next rheumy appt, that way you don't have to have that totally agrogant and ignorant doctor involed in your care any longer.

I really hope you manage to keep your chin up, it sound as if you are coping amazingly well.
Good For You 8)

Take Care

Good Luck :)
See less See more
Reply
Save
Like
S
My goodness Mrs M,
I can understand how frustrated you feel. I had the same feeling for years but I had to just keep going to find out what was wrong with me.
It took me 12 years to get a true diagnosis and even now sometimes Im sure they just dont get it.
There must be very few people who would make up the fact they were suffering like you do and I did too.
You just have to keep on the case though to find out whats causing it all. It doesnt help though when they say things like its all in your head for goodness sakes.
You can sometimes get a private appointment for the first time then get referred back to the National Health for tests and further treatment.
Its all such hard work though when you already feel so bad. Keep with it though. If you dont do it and get to the bottom of it ... who will?
Good luck,
Luv Sal x
Reply
Save
Like
S
Hi Mrs M

I do hope you get sorted, my heart goes out to you.
Hugs Sandy
Reply
Save
Like
M
Thanks Guys:)

I think maybe I was ready to give in a couple of weeks ago but I know that somethings not quite right!

I'm going to try and stay strong and get to the bottom of things and then hopefully will be back on the up.:)

Reading the many posts over the last several months on here I know that I just can't give in and that hopefully as many of you have in the end got answers I too wait for that day. I'm sure answers would help to get back on track and to make sense of all this although I'm not sure despite what it is I will understand why me?

Have a great day.:)

Mrs M x
Reply
Save
Like
M
Strength together

Hi Mrs M
I'm so sorry you have had such a time of it, and Carol and others too:worried:.

I too have had 5 years of fighting doctors in my area, as we have no specialists, privately or at public hospital, so I know how many feel:mad:.

It's sad that our G.P,s don't know Lupus/related illnesses, and make light of our terrible pain,:eek: let alone anyone who has had strokes/seizures, like me.
I have had to go south and north 7 times at own expense (no money), and not getting far, except lupus-like symptoms last September- and Plaquenil at last- but no sympathy at all from G.P.(We'll see). At moment I'm waiting for next 3 specialists' appointments eventually (2 cancelled lately for later?)

The best for all of us is to hear that we are all supporting each other forcefully:wink2:, and hopefully get some help.
Reply
Save
Like
1 - 20 of 20 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
The Lupus Forum
A forum community dedicated to people living with Lupus. Come join the discussion about treatment, nutrition, news, reviews, accessories, classifieds, and more!
Full Forum Listing
Explore Our Forums
Living with lupus Symptoms Chit Chat Looking Good, Feeling Better Religion & Spirituality
Top