I have been diagnosed with none enduced liver problem, heart disease, lung, arthritis, had a stroke , diabetic, skin disorder ,
everybone in body feels bruised, spondylitis, nerve disorder,
In growing toe nails , dipping finger nails, trouble in swollowing
Severe cramp in bowel and stomach, Odemea ,I can go on.
Yet my gp will not look at testing me for lupus as he said it's not always successful.
Does anybody know how much it would cost to be checked out.
Get a second appinion !!!
Hi tilly49mint,
You sound like you've got a lot going on there haven't you. Unfortunately I can't answer that question as I live in the UK, but what I can say is that it was a Rheumatologist that diagnosed my Lupus when I went about my osteoarthritis.
She gave me a real going over doing lung checks etc so perhaps it might be worth getting in to see one of those who maybe then can do the necessary checks on you to diagnose it.
I'm sorry if my answer isn't that helpful, and I hope you manage to get the diagnosis you need.
Good luck xxxx
Hi Georgie63
Many thanks for your response I too live in uk due to my own
GP failure of investigation I went private and successfully had treatment and a operation for one of my illnesses which should have been diagnosed two years previously by my own GP.
I posed to him about being tested but he wants me to ask the colonoscopy dpt to do it👩🏼 Beggers belief plus he said to hard to diagnose.
I feel like a hinderence rather than a patient, it's funny I use to be a nurse before my RTA. 😢
Many thanks I do hope all well in your corner xxxx
Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.
Your GP is correct. Most doctors cannot diagnose SLE as it is very hard to diagnose. There is no one blood test.
I would need to know where you live.
It does seem that you have a great deal of medical issues which may be unconnected with lupus. Why do you think you have lupus? Just because lupus can mimic every disease does not mean you have lupus. One can have arthritis without having lupus.
If you are in the UK and have private medical insurance, I would recommend Professor Graham RV Hughes at the London Bridge Hospital which has a Lupus Clinic.
If you use the NHS route, I would ask your GP to refer you to see Professor David D'Cruz who is the Clinical Director at St Thomas' Hospital Lupus Clinic, London.
You also need to understand that it is unlikely you will get an immediate diagnosis. This can take months, even years.
IMHO, I think you should concentrate on your liver problems, lung problems and your heart. I would see specialists in these areas and find out what is the matter and the best treatment. If they think there is an autoimmune problem, then they will advise you.
I think you should write out in full ALL the problems you have and all your symptoms and write down when these symptoms started. I do not understand what you mean by nerve problems and I do not understand the "none enduced liver" - do you mean drug induced liver?
I would have thought that you really do not need another diagnosis. You need to find the best specialists for your liver, heart and lungs. Discuss with them your problems and they will be able to advise you if there are any connections.
We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.
By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.
When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".
Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.
I look forward to talking with you more!
Sometimes we need to talk to people who understand and who are not family or friends.
With good wishes!
Ros
Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.
Many thanks for your detailed support when I mentioned my liver I thought I mentioned none enduced by alcohol . My fatty liver is due too I feel all the medical drugs I have too take due to my other conditions.
Where as you also mentioned not understand my comment on my nerve system i am suffering with tillting vertebrae C3,C4 also I have a disc bulge impinging on my spinal cord plus the diabeties effects my nerve endings.
I am very lucky person due to my condition 21 years ago they say I'm a walking miracle.
You mentioned my ammune system the readings are down plus my vitamin D is very low awwww even more tablets .
I can open a chemist with all my Meds 🙁 Hey I'm breathing 👍🏻
Again many thanks .
Even with the NHS, you can get a referral to see Professor David D'Cruz at St Thomas' Hospital, London. If you have to travel a long way, you can arrange to stay overnight at The Simon via the NHS. There are people who have used this service on the other website I mentioned to you.
You say you are a diabetic. Do you have Type 1 or Type 2. The former is autoimmune. Diabetes can cause a neuropathy which can be very painful.
What advice were you given regarding your vertebrae C3/C4 ie your neck? This can also cause pain if the vertebrae touches the nerve.
I hope you are seeing a cardiologist and a specialist for your lungs.
As I said, you obviously have some very challenging medical problems - but unless your GP believes you have lupus, I would concentrate on seeing the best specialists for those specific conditions - which would happen even with a diagnosis of lupus.
I also think that given you have so many medical problems this is bound to affect you psychologically/emotionally. This is both understandable and a "normal" response. Are you able to talk to someone about having to live with these distressing medical conditions?
With good wishes,
Ros
Hi Ros
I was told I could have an operation on my C3&C4 vertebrae 5y ago but I was told it could paralyse me so I opted out and resorted to strong pain killers they don't always work.
I am a level 2 diabetic but on borderline insulin dependent
their actually keeping an eye on it. I have too have 7 toe nails pulled due to diabeties in March awww horrible thinking about it.
Could I write to professor D'Cruz without a referral as I can now confirm I'm literally on meltdown it's me who has to push my own GP in past funny thing is I'm always right.
Thanks Tilly49Mint
Ros i forgot too mention I have also been checked for Crohens disease three times over ten years that's also negative 😒
Crohn's disease is an autoimmune condition and it is good news that this is negative. Did your doctor mention irritable bowel syndrome which can be very painful.
With good wishes,
Ros
Get an second opinion. I had to. Doctors aren't always right.
Hi sandwiches
I will look into it but difficulty is my GP a senior partner so I won't hold my breathe .
I've already used my own monies to go private before due to my GP now monies have run out.😟
I think due to my medical history my GP surgery must have paid a fortune for all the tests referrals MRI ,, X-rays , scans etc testing me or referring me costing them more money I feel due to cut backs with the NHS I've got no chance of investigation for lupus .👩🏼 many thanks for your advice much appreciated.
So as I have predicted my brother his wife and children have dropped out of my wedding
Nose Sores
Utter Despair!
I am new here. :-) 