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Pamela b
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Discussion Starter #1
Hi
I have waited 4 months to see a consultant and had to fight to get a referral as my Gp thinks I am depressed and evrything is in my head.
I have had a terrible 2 days, my knee is very swollen, one side of my face is up ( dentistry checked and is fine ) and the chest pain so bad when I breathe and I seem to have really bad flu and my arms are covered in a red rash . I called the GP surgery but they ahve no appointments so the doctor called and told me to put ice on my knee and take some paracetemol. I have been up all night with pain.
I have just found out that the man I am seeing is a Rhemathroid ( excuse spelling have dyslexia today as well ) arthristis specialist and I am booked to go to the arthritis clinic.
I am in despair and wondering if this will be any good at all as I dont have arthritis.
My husband has said that we need to find out who we can go to who can help and we will pay for it as this can not go on as every week I just seem to get worse.
Does anyone know who i can go and see ? I will travel anywhere at all if it will help ?
Or am I being a drama queen and will this guy help ?

Pam
 

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Are you sure it's not a rheumatologist you're seeing? They would tend to be the ones dealing with autoimmune conditions, including rheumatoid arthritis.
 

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Hi Pam, sounds like you are going to see a Rheumatologist..they usually deal with RA as well as other auto immune problems as alimonkey has said. Hopefully if he is proficient in auto immune diseases he will be able to rule in or out RA and investigate further. Hopefully he will take a load of bloods and a good history from you..don't forget your symptom diary, mark your pain levels out of 10 every day... photos of rashes etc etc. Highlight the things that are the most important points for that appointment and take somebody with you, sounds like your husband would be a good support, sometimes when sitting opposite a professional we complain more gently or with a smile on our faces (I am guilty of that one..) I got told I wasn't in enough pain for it to be lupus!!! It was MCTD instead which is an overlap of lupus, schleroderma, raynauds... and boy was I in pain...but still not wanting to make a fuss....:( My husband was far better at telling it how it was... I hope the appointment is positive and you get some treatment very soon..keep plodding, you will get there and most of us are told at some point its in our heads.....phew!
Claire X
 

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Pamela b
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Discussion Starter #4
The consultant

Hi
I am not sure but my daughters friend ( it was her who first suggested that maybe I should have a test for Lupus, she is a GP who now works in the buisness sector as a sort of health consultant ) has said that she is aware that the clinic is definetly an arthritis one on that friday.
I just want to prepare for a second opinion as I know this can not go on as my life has no quality and I need to get some help for the sake of my family as well as me.
Thanks
Pam
 

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Hiya Pam, If you are not happy with the consultation you can always go for a private consultation... it costs about 150-200 for the appointment and you could ask your GP to do the blood tests prior to the appointment.(up to 3 wks for auto immune bloods to come back) if your Dr would be happy to do that it saves you the cost of private bloods. The bloods for a full workup privately are (depending on what they do) around 400 ish pounds. You can get a quote from the clinic before your appointment. You may be booked into the arthritis clinic incorrectly but you should be seen by a rheumatologist, you just need to be sure you are seeing the consultant, not a junior if possible.... he will have more experience, one would hope! It seems you have been waiting a long time for some answers, I hope they are now on the horizon for you... take care,
Claire X
 

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Hi Pamela,

As the others have said RA is also an auto-immune condition and my specialist rheumy would also deal with RA cases as well as things like scleroderma, sjorgens and dermatomyositis.

Of course, you may find that the doc is not sufficiently specialised and the doc himself may actually say so and say that you should see someone else. Getting answers is a long road but the main thing is that you have now taken a decision to get help and that is the most important and very major first step.

I remember, in the year that I got diagnosed, walking into my GPs and saying to him that my New Year's resolution was to be his most annoying patient and pester the life out of him until I had answers. He laughed but it was a huge step and one that really determined how things went from there.

I hope the appointment goes well but remember, if it doesn't, he is not the only doc out there and you will have other options - believe in that and in yourself.

hugs :hug:
Katharine
 

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Hello Pamela

Rheumatoid arthritis is an autoimmune connective tissue disease, as is lupus and both are dealt with in the first place by rheumatologists who will refer to other specialists as needed for specialised areas of concern. Referral is common because lupus can affect any organ or system in the body. Joints are commonly affected and I think you said you do have some joint pains. Arthritis only means inflammation of the joints but there aren't always visible signs of inflammation as we think of it, such as swelling, heat and redness. Inflammation in the general sense occurs whenever the immune system is especially activated for any reason. Another big difference between lupus and RA is that lupus seldom deforms the joints.

All rheumatologists deal with rheumatoid arthritis along with other musculoskeletal diseases whether autoimmune or not. All lupus specialists are rheumatologists but most rheumatologists are not lupus specialists. They may however be perfectly competent and be sufficiently knowlegable in treating it. Lupus isn't always complicated and is sometimes pretty quickly diagnosed despite the impression given on the forums.

Obviously I can't say if you have lupus or a lupus variant but you certainly have a number of symptoms that would fit with a lupus diagnosis. Maybe there is a member who knows this centre you are going to, and very possibly the Yorkshire LupusUK Branches could give you some insight and hopefully, reassurance.
You might not get any opinion at all in this first visit because there will be a whole slew of testing to do ( 15 vials is common) and a follow up appointment. Further testing might even be ordered depending on those results before a diagnosis can be made. I would certainly keep this appointment because it is quite important to have a rheumy locally especially if the GP is useless.

If you are not satisfied and have good reasons for feeling not satisfied then you can think of going privately. I don't know about private consultations at the lupus centres near to you, Leeds and Newcastle. You can always investigate that option if need be. The one most often mentioned is the London Lupus Centre at London Bridge Hospital. Few people can afford to have treatment privately all the time.

I am perfectly sure that your health problems are not all in your mind. I hope you don't have to wait very long to get a better idea what might be going on and start the right treatment. Make sure you have your lists ready. A first consultation is always an ordeal. I hope he turns about to a good listener, kind and encouraging.

Many Hugs

Clare
 

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I just wanted to mention that another thing about getting the tests done by this rheumy is that you have them to hand - if you aren't offered copies of test results insist on getting them as is your right. It isn't always the case that GP's will order the necessary tests.

I haven't read any mention of your GP even being willing to order an ANA or rheumatoid factor

:)
Clare
 

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Pamela b
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Discussion Starter #9
Thanks

Thanks everyone
Clare no my GP has not done any tests.
I have routine bloods because of an underactive thyroid and routine checks on high liver enzymes , and this picked up low red bloodcells. but she says some 4 months later that she is still waiting for an answer from haematology about this.
In Feb I had to be refereed back to cardio becuase I had atrial fibrilation ( had pericarditis last year 2x and 1 last month ) and he said I now have a mytral valve problem and that something underlying was going on and needed investigiating.
She just told me that basically I am healthy and I am very lucky.
My daughter rang her when i collapsed and demanded I be sent to someone to attempt to make things better and she rang me and said she would but that " He wont find anything and maybe then you will take my advice and have something for depression ".
So no she wont do any blood tests as I am healthya nd all the ill health is in my head. My husband has said that if I am not happy Friday we will raid the bank for what ever it takes to get my life back so yes I will go but hold no hope as I dread to think what the referreal actualyl says , probably " menopuasal maniac ? "
Thanks guys but just in case anyone know ofa a good guy I can think of just in case .......................
 

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its prob a reumatoligist ( i seem to have dyslexia today too!). When I saw mine, it turned my life around. He was great and got rid of my pain. Unfortunaltly I had to see him privately but he took me on as NHS once I had been diagnosed.

Good luck! x
 

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While it may be an arthritis clinic, chances are good you will be seeing a rheumatologist and they should have had training in all the diseases at one point. Be sure to bring a list of questions, list of past illnesses/diagnosis, current symptoms, and list the concerns you really want addressed and questions you have that you want investigated. Then don't leave the office until you go over all of them.

The specialist you see on Friday will hopefully recognize that your symptoms go beyond arthritis, and probably beyond rheumatoid arthritis and will order the additional bloodwork you need and possibly sign you up for another specialist in the clinic that may be more of a lupus expert or autoimmune expert.

Do you know what blood tests you should ask be run given that you have some concerns and rather telling symptoms of an autoimmune disorder? ANA is usually the first one, and if that is positive then others are also run including the lupus panel. You can read about all the various blood tests on the main site.

Good luck!
 

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Pamela b
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Discussion Starter #12
;)Thanks Maia

I have an idea about bloods but dont want him to think I am telling him his job. I have a list of my own history going back to 2006 for him along with a list of symptoms, I hope he will read them as it will be faster than telling him.
Sometimes these things turn out better than we hope as I know when I was sent to the endryo clinic cos they coulnt get my thyroid stable as the immune syste just attacked it more they were great and I was there for 3 hours and they even drew me diagramd and gave me charts they wanted to aim for. mind as my appointment is 16.20 Friday not much hope of them staying 3 hours !
Thanks and I will try to get my batte gear going but it so hard when you feel rotten
Pam
 

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Hello again Pamela

Unfortunately this all depression and in the mind approach is very common indeed :(

Arte you asking for the name of a good lupus rheumatogist to see privately? There are several top ones at the London Lupus Centre many of whom work also at the NHS Lupus Unit at St Thomas. Many of us can warmly recommend them from personal experience either at the London Lupus Centre or St Thomas.

Dr D Cruz is highly thought of by many of us including myself and there are several others.

Bye for now and hugs

Clare
 

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Pollianna
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Pamela, under the new NHS laws we can see any consultant anywhere in the country. I saw dr D'Cruz as an NHS patient and got amazing treatment. he saw me 3 times in under 6 months. He even sent me to his collegue a proffessor of genetic dermatology to find out if a genetic skin problem I have is affecting my illness. He was amazing too and he is even following me up :eek: After yrs of struggling I feel as though i have won the lotto :lol:

You can sleep over at the St Thomas hotel for about 30pounds a night. I would highly reccomend it, best thing i ever did
 

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:hug: try not to worry too much about what your referral letter says. I remember having a pretty vague and silly one when first referred to my lupus doc. He didn't take a lot of notice of it anyway and whilst I had my list with me and he did take it and study it, he wanted to ask me a lot of questions to get to the bottom of it. A good doc will do this and hopefully you will strike it lucky on Friday. If not then pick yourself up and dust yourself off with our help and go and see someone privately :hugbetter:

I remember when I first came to the site I was worried about my initial referral letter and what sort of impression it would give the specialist. A very wise woman (also a nurse) said to me that many consultants consider some GP's referral letters not even suitable for toilet paper :p:hehe: so bear that in mind and make sure you have your say :wink2:

Good luck and let us know how you get along.

PS I ended up changing my GP to another in the same practice, best move I ever made, he was really attentive to detail and without saying it thought the other guy had made a lot of assumptions and missed a lot of important detail. Ain't that the truth now I look back on it!

love
Lily
 

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Pamela try not approaching it as a battle despite your experience with the GP. You don't know yet how this stage of the general struggle for validation will turn out. Naturally you won't be telling him what blood work to do, but you will eventually know what was done and be able to judge if it corresponds to what you can expect. Lots of patience required in this game !

Hugs
Clare
 

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Pamela b
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Discussion Starter #17
Thank you so much

I just want to say thank you all so very mich for your support and suggestions. I have made my mind up about Friday that I am going with an open mind and will change asp if not happy. I will either pay or ask to see Dr Cruz.
I think I am just so shattered after 2 nights without sleep due to pain.
I have given up so much over the last 3 years because of feeling ill, a full time well paid job I loved because my doc said the rashes were due to stress and taken a very low paid menial one. I gave up swimming and tennis because I cant do it anymore. I dont show my dog now because it is too much and we have very little social life. We sleep in different rooms because I wake hot and also the pain bothers me and it is just not fair to keep my other half awake.

I have done all I can and now it is up the health professionals to try.
Thanks guys, today will be better, I know it will
 

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Just a couple of things Pamela,
No blood test takes 4 months to analyse:mad: Either the specimen is lost or your GP's request was not heard.
If you are anaemic your GP should react.
Also, like Lily I had to switch GP's to another in the practice since the former wanted to treat every symptom (including pleurisy,pain and weight loss) with antidepressants and wouldn't even order any tests. My current GP is much more sympathetic.
Good luck to you
 

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Pamela b
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Discussion Starter #19
Blood tests

Hi Big sis,
maybe I wasnt clear but routine bloods came back with low red blood cells and I was called and told that they would contact the lab to ask why they were low and as at 2 weeks ago they had not had time !

Changing Gp is hard as I have been with them for 50 years ( age showing now ) and this ones father was my GP before he retired.
Maybe it is just me being a big drama queen and I will end up with a virus dx.
We shall see and thanks once agian for help, advice and support
x
 

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pamela b;545189 said:
Changing Gp is hard as I have been with them for 50 years ( age showing now ) and this ones father was my GP before he retired.
Maybe it is just me being a big drama queen and I will end up with a virus dx.
We shall see and thanks once agian for help, advice and support
x
Changing GPs is not hard at all - I just did it - I walked into the one I wanted to join, I filled in a form, my records and registration will be completed tomorrow. So physically it's really quick, like a couple of days tops. However I can understand if you've been with them most of your life it seems a little bit daunting. But as I've discovered, you only find out how good, or bad, your GP is until you have a health problem that you can't get to the bottom of. My GP was great, if you had a chest infection or something simple, they were great at treating symptoms, not good at finding out the underlying cause. As yet, all my knowledge of lupus has come from the internet, I have yet to have any decent information from any health care professional.

And no you're not being a drama queen, you're ill and you want some answers. I thought I was going mad a few months ago, I was literally ready to check myself into the funny farm - I was in pain, arthritic, mentally distressed, chronically fatigued, my face and neck were bright red and blotchy and I didn't know why.

If you think it will help to have someone else's opinion, then by all means change your GP and get that referral. Hope you get some answers soon, and in the mean time, look after yourself.
 
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