[Claraxx]

Well, after my first set of results came back showing something was wrong (i.e. liver function low, ESR markers very elevated) my antibody tests came back today and I've been told they are 'low' but within normal limits.

I'm still feeling terrible and now also have yet another infection (I've been getting various infections every other week for the past 6 months), this time it's a chest infection and I'm now on antibiotics (again).

I really don't know what to do, I'm at the GP practically every week, still feel awful :worried: I have medical insurance and can use it to see Professor Hughes at the London Bridge Hospital, my GP is more than happy to refer me.

If the antibody tests were 'normal' is it worth me going to see Professor Hughes?

Any advice would be much appreciated.

Thank you.

Clara

 

[sadieone]

Hi Clara,

Sorry to hear you are having a hard time sorting things out with your health.

Though I don't now who Professor Hughes is,, i can say seeing another doctor for a second opinion is always good. Especially, since you are having so much trouble now that your GP can not sort out for you.

Is this professor a rheumatologist?? If so he may have different methods on how to determine what is wrong with you.

Wishing you the best.

 

[greenhaggis]

Clara,

Do you have any of the other symptoms related to Lupus?

Perhaps it is best to be seen by the specialist in London so that further investigations can be carried out!

Lesley

 

[Claraxx]

Clara,

Do you have any of the other symptoms related to Lupus?

Perhaps it is best to be seen by the specialist in London so that further investigations can be carried out!

Lesley

I have so many symptoms it's driving me insane - ranging from the facial rash, joint pain, swollen/painful joints, mouth ulcers, bruises, fatigue, short of breath (but I have now got a chest infection?), dry eyes, dry mouth, rash on arms and legs, and it goes on

 

[greenhaggis]

Clara, it does sound like you should definately be referred to a Rhuematologist!

Another urgent and important thing needing action is your eyes - please see a eye optician for a test and you 'must' tell them about your dry eyes!

Dry eyes need to be treated, if not you are at risk of pressure building up and at the worst possibility this can lead to glaucoma.

You need to be very procative with your health! Even if in the end nothing is wrong at least you can put your mind at rest and stop being stressed! If things are going wrong with your body then it is important for quality of life to get help!

Lets me know what you choose to do!

Take care!

Lesley

 

[Maia]

Definitely worth a trip to a lupus specialist near you... with your symptoms and some abnormal bloodwork. You should ask for a copy of the last batch of bloodwork which they tell you is low enough to be normal so you know exactly what was tested and what the results are. Then you'll be sure to have it for the specialist you will be seeing sometime soon. At some of the specialists they will test your eyes for dryness, and can refer to dermy's to get any rash areas biopsied, etc. There are many paths to diagnosis... you should definitely pursue a specialist!

For the repeated infections... you may ask about being tested for IgA, IgG as sometimes after a relatively normal childhoold/young adulthood there is a sudden increase in infections when there is a deficiency in one or more of the immune factors. I have IgA deficiency but wasn't diagnosed with it until my early 30's...

 

[LolaLola]

Clara, I do know that Dr. Hughes takes a lot of notice of dry eys in cases of difficulty diagnosing. He is also a thoroughly nice man. I have seen him and he is wonderful,very sympathetic to the hardships we go through on the way to diagnosis.
He is a very fair man, go and see him , he will not drag you in for unnecessary appointments just for the money. You could always go once and see what you think.
x Lola

 

[Clare.T]

Definitely go see Dr Hughes or one of the other top specialists at the London Lupus Centre. They are prepared to diagnose without blood work based on clinical symptoms health history and what they observe.
It can be important to exclude lupus or a similar disease too and I very much doubt they would say you had lupus or whatever if you didn't .
A bit of effort now could save endless hassle and delay in treatment and start you on the road to much better health.
If your insurance wouldn't cover further private consultations or post diagnosis then you can transfer to the NHS. It is always a good idea to have someone locally anyway.

Don't hesitate - it could be the best thing you have ever done for yourself.

Lots of Luck and let us know how you get on !

Clare

 

[ALWIN]

Hiya

I went to London Bridge Hosp to see one of Prof. Hughes' team and that kicked off diagnosis and treatment. I was advised to do that here. I asked my GP to refer me and he said he would on condition it WAS private.

Until then I was mainly 'fobbed off'.

After diagnosis I was able to track down a more local and NHS consultant who specialised in SLE, etc. I asked here for help finding somebody in my area and a lady sent me a PM naming somebody about 20 miles away.

So listen to the moderators.

So I paid privately, which I believe sped up access to treatment on the NHS. If you do have any of these conditions it makes sense to start treatment soon rather than late. Also, if they say you do not have it, you can start hunting other potential causes. It is often a case of ruling one thing out after another with health issues, rather than getting it right first time.

Either way you move forwards in getting answers.

So I say - definitely go.

good luck!

 

[Claraxx]

Thank you so much everyone, I've made an appointment with my GP for Friday to get the referal moving.

I think I've reached a stage now where most of my blood tests are coming back abnormal and I feel so horrible that it's time to get things sorted

 

[greenhaggis]

Good for you Clara!

Let us know how it goes and take care!

Love Lesley

 

[granny weatherwax]

Just read your Post Clara

I am glad you have made an appointment with your GP to get the ball rolling. Like Alwin I to was fobbed off for years, until I got the rash. I too went private for the initial consultation firstly to the dermatologist who sent me to the rheumatologist and finally got my diagnosis.

Good Luck Clara and keep us informed of how it goes for you.

Take care of your self and as Lesley says be proactive, write everything down before you go to your appt with Professor Hughes, past medical history the works, everything you can remember... it all helps!

Claire xx

 

[mysharonna]

Just wanted to wish you well with your appointments! I live in the USA, but have heard wonderful things about Dr. Hughes. I hope he can sort things out for you and get you on the road to feeliing better.

Let us know how things go!
Sharon

 

[Claraxx]

Although I am not seeing my GP until tomorrow I rung the London Bridge Hospital today and have made an appointment to see Professor Hughes on the 30th May. They were so helpful, I relayed to them about my blood tests being abnormal but the antibody test being normal and they confirmed I should go and see them as something is obviously not right.

I finally feel there is light at the end of the tunnel and am hopeful I can be sorted, even if it isn't lupus, there's something up, and with my catalogue of other auto immune conditions, I think I'm going to the right place.

 

[greenhaggis]

Definately getting proactive now!

Good luck with GP tomorrow!

x Lesley

 

[louise67]

hi clara,
i am in a similar position to you.
can i be cheeky and ask, did you need a doctors referal to get an appointment? how much is it costing? and do you live in london?
i live in devon but am thinking of going to see him, not sure if i can afford it though
thanks
take care and have a good day

 

[Clare.T]

Jolly good Clara !
I'd get an NHS appointment too

Louise, you can call the London Lupus Centre and ask them - it's a business like any other so asking how much the service costs is perfectly usual. You don't have to have any referral but it's a good idea to have your case for having lupus (or a similar sort of disease ) well prepared. You will need it for the consultation anyway.

I also think it's a good idea to tell your GP what you propose doing, saying that you need to get some answers to improve your quality of life even if you learn that most likely you don't have autoimmune connective tissue disease.
The GP will need to do the prescribing anyway so you want to stay on his good side as far as possible and you'll almost certainly need a local rheumy too.

http://www.londonlupuscentre.co.uk/

Good luck
Clare

 

[louise67]

thanks claire,
i have a very good gp who wont have a problem refering me.
i have just got back from the eye hospital and she took photos of the patches of inflamation i have in y eyes, and said that the GP, the eye specialist and the neurologist had all communicated together and are now pretty certain of a autoimmune disease, so i feel a bit more positive today. i feel like there is a diagnosis in site after struggling with various serious illnesses for the last 10 years.
it doesnt feel right to say it, but i feel quite excited about i all. :hehe:

 

[Claraxx]

hi clara,
i am in a similar position to you.
can i be cheeky and ask, did you need a doctors referal to get an appointment? how much is it costing? and do you live in london?
i live in devon but am thinking of going to see him, not sure if i can afford it though
thanks
take care and have a good day

Hi Louise,

I'm fortunate in that my GP has been wonderfully supportive and understanding if somewhat lacking in pro-activity shall we say Thanks to this fantastic site I learnt about the London Lupus Centre, I did the leg work by myself in arranging the appointment and they were so helpful over the phone, advising I would at the very least need my latest blood results and preferably the referal letter which my GP is meant to be doing. However, I today got photocopies of all my results which I will take with me so I'm not too worried if my GP manages to get the referal letter done. I've also typed a full medical history from the year dot that I'll take with me.

I'm glad you feel more positive, it's so hard isn't it when you know something is wrong and you struggle to get a diagnosis.

I had another blood result back today which shows a positive rheumatoid factor and also the latest ESR level is now even higher than it was a couple of weeks back, but I'm really not worried about it now as I feel I'm finally going to get a diagnosis, lupus or not