[marydoll]

I dont know where to go next...following a useless appointment with my General Practioner. I have had many tests over the last 3 years. I was investigated for multiple sclerosis and this was ruled out. The consultant I was seeing had blood tests done and the ESR was raised so I was told I probably had a connective tissue disease such as lupus. Eventually the rheumatologist said my results were " inconclusive " for lupus and diagnosed fibromyalgia. I have had a constantly changing variety of symptoms including muscle and joint pain, fatigue, muscle weakness, swelling around joints, nausea, liver inflammation, blood and protein in urine, swollen glands and rashes. My last doctor suspected I could have lupus but warned me it might take years to get a dx. Unfortunately she has now left my medical practise and I have been quite ill for the last 6 months. Following an ultrasound scan of my liver(arranged with previous GP) I was told I had dilated bile ducts by the radiographer. I had an appointment with the other GP at the practice on Monday and left in tears. He said I dont need any more tests. That he is certain I dont have anything other than fibro. He didnt want to give details of my blood results as I would just" look them up on the internet" He believes I magnify my symptoms due to psychological problems. I had major depression 3 years ago and he says this is having a physical effect. He says my liver is ok and that autoimmune disease does not affect the bile ducts. I said I had been worried about autoimmune disease affecting my liver and gastro tract. I have had several episodes of unexplained inflammation in these areas. I was basically dismissed and told to take ibruphen as this was not too toxic. He said that fibro is incurable and there was nothing he could do. Also that it is not worth pursuing further tests for lupus as even if I was found to have it and therefore have a label for my symptoms, that the medications used to treat it are toxic so I am better off without them.
I am so sorry to lumber you all with this rant but I am feeling very low, am in constant pain and wonder if I should just give up. Can anyone identify with my situation and give me advice.
Thankyou
Mary

 

[lazylegs]

Hi Mary,

Many of us have been in your same situation. Don't give up. Seek another opinion from a different physician. If this doctor doesn't know that Fibro can be treated I question his knowledge in other areas.

Many :grouphug2: to you,
Lazylegs

 

[Maia]

I'm not sure what country you are in, but in most you are legally entitled to a copy of your blood work. You can simply call the office staff and request a copy of them, then you will know what has been run and what hasn't, what's been found to be abnormal and what has been normal.

I hate it when a doctor dismisses health complaints as due to depression or mental illness. It seems as you have enough indicators that it is more than this, so it must be very frustrating for you. As if people who have had depression (probably over 50% of the population) can't also have real physical problems.

What he said about the toxic medications used for lupus even if you do have it - well that's just crap. They certainly all aren't toxic, and the ones that he might consider toxic are used in much lower doses than their original purpose (to prevent organ rejection after transplant of chemotherapy). The most commonly prescribed drug is Plaquenil which is quite likely safer than many over the counter meds such as Tylenol and Advil even.

I hope you go back to a doctor that believes your symptoms are real, and need treatment, and will disclose fully with you what has and hasn't been found in your bloodwork, and tests done thus far. With-holding information is sometimes worse than full disclosure in the amount of worry it can create. Certainly that would be the case for me!

 

[Sage Hen]

Hi Mary,

Your dr. is the one that sounds depressed, to me..He is so negative. Of course a person, will get depressed after suffering a long time. I don't understand, why so many dr's, think that depression is always the first illness, when we go to them with all our symptoms.

I want to encourage you. Please, don't give up. The other's here, have given you good sound advice. I just wanted to add..that your, dr. sounds depressed to me. I think..they forget that dealing will ill people every day, can have an effect on them, as well..

The best of luck..to you.

Sandy

 

[LolaLola]

Mary, If you are in the UK,you always have the option of going privately to the London Lupus Centre. I believe Dr. D'Cruz will see you without a GP Referral.
I know it is hard to have to pay initially. Why I am recommending this is because enlightened Drs. like Dr. D'Cruz will treat you for "lupus like illness" even in advance of a proper diagnosis, if your symptoms warrant it.
I do sympathise with you, many of us have been ridiculed and badly treated along the way.
xLola

 

[marydoll]

Thanks

Thank you all for your encouraging replies. I have talked to a couple of friends and in light of your posts I will ask to see another doctor. My friends are not so sure. I think they believe I have gotten a dx of fibromyalgia so why look for other problems. I find this frustrating but I can understand their views. I do feel I know my body better than anyone else. My symptoms have always been more than those explained by fibro. Thank heavens for this site and the kindness of people on it or I think I would really sink into a depression. I may follow up the route of private consultation. How have others fared doing so. Is it a worthwhile option?
Again, thank you so much. You have raised my spirits.
Love
Mary

 

[SoCalEric]

Well, certainly sounds like Lupus! Do you still have blood and protien in your urine? Have you had a 24hr urine test? Many of your symptoms are pretty common Lupus stuff, but the protien is something to worry about.
I went though years of troubles, but this was many years ago when the internet wasn't available, so I trusted my Doc. and had no idea what was bugging me....I just knew something was! My Doc. treated me like a Hypo., said I was "going though a bad phase". After a few years of this things got worse. Blood and protien showing up in my urine is what got me a diagnosis....it was hard for my Doc. to ignore that! Unfortunatly by the time my Doc. diagnosed me with Lupus things were pretty bad. He did send me to a Rumy that I still see and love. He imeadiatly diagnosed me with Nephritis, I had a biopsy, which determined stage IV Nephritis, and started chemo shortly afterwards.
It's your statement that you have Blood and Protien in your urine that worries me. That can be very serious. I know in my case it progressed pretty quickly. Have you shown any signs that your retaining water, has your blood pressure risen? I well know the fustrations of dealing with a Doc. that thinks your a pain in the butt. But if your Kidneys are involved it's important to keep on it, because if they are involved it's very serious..you need your kidneys!

Best Wishes,
Eric

 

[julsie]

Hello Mary,:hug:
No,I doubt you are a hypochondriac,you know when something is wrong with your body.If you read some of my posts you will see that we have had very similar experiences...in fact,is your doctor my doctor?:lol:Take heart,try and get a referral to St.Thomas's.I too hate it when some doctors use depression as a convenient 'catch all' for any illness and dismiss your opinions because of it.Your quality of life is so important and all you are seeking to do is improve it,so have faith in yourself and keep trying until you get some answers,
Julsie

 

[cemc]

I'd like to challenge the statement that autoimmune disease doesn't affect the bile ducts. I believe there is an autoimmune disorder called primary biliary cirrhosis which does affect the bile ducts and is often seen in conjunction with other autoimmune disorders or where there is a family history of autoimmune disorder.

 

[marydoll]

Hi folks
thanks for further posts. Im greatful for all the helpful comments. I followed up the post by CEMC regarding Primary Biliary Cirhossis and found an interesting article on http://www.netdoctor.co.uk/diseases/facts/biliarycirrhosis.htm

I hope I have the courage to speak to a doctor about it. My husband thinks I should take someone with me for support.
Eric, thanks to you too for your post about the blood and protein in my urine. I was told by the doc that it was probably an infection and given antibiotics. No follow up offered. I think maybe I should asl for another test.
Im feeling much more energised now thanks to the support from all of you.
Love to all
Mary

 

[LolaLola]

Glad to hear you feel a little better. We are always here for you.
You asked if private appts. are worthwhile. They were for me. Once I had been seen privately I had a firm case to ask my reluctant Health Trust for an NHS Referral to St. Thomas'.
Keep up the good work,
xLola

 

[Douglas]

Been there. Done that. Thought it was all in my head. Felt like &^%$ and was heartily sick of being considered either a "medical mystery" or a nut case.
You are definitely not alone and I hope another MD will find a more satisfactory diagnosis and, more importantly, treatment.
Hang in there!
Douglas+