Private Consultant

[kelly8975]

Hi All,

So I have been sufferfing with what I believe is Lupus for nearly 3 years now and nobody is listening to me I have a LOT of the symptoms and can feel myself getting worse. I got refered to rhemutology by my GP reluctanctly and everytime I see him he does not take me serious enough, all he keeps saying is that every complaint I have could all be seperate issues and just keeps referring me to different clinics. I have issues with my Bladder (amongst other things) and the urologist agrees that it is probably Lupus causing it,

I have spoken to a Lupus advisor and they agree that I have more than likely have it and that there is a very good indication as my bloods are also raised and pointing to lupus just not over the NHS threshold.

I have sat today and cried all day out of frustration, i don't want Lupus I am not looking for symptoms just keep telling the doctors what they are and photo evidance. The last straw for me was when the doctor told me to THINK HAPPY THOUGHTS and that will help solve some of my issues (I kid you not)

I am saving up for private consultant and I just wondered if anyone had any recommendations I am in the north east but willing to travel around 2 hours if the right person is there.

I have a consultant on my door step but he doesn't specalise in Lupus and I just worry he may not listen either, or does it not have to be a consultant who specilises in Lupus.

I apologise for the spelling and grammar just frustrated and typing.

Thanks in advance

K

[Mizzme]

Fibromyalgia is often misdiagnosed as lupus and can effect your bladder might want to look at that. However I’m responding because I’m going through basically the same thing right now. I insisted my doctor check me, RA was negative but I got a positive ANA test. Then she tested me directly for Lupus and it’s negative. It was a long emotional week. & I still don’t know what it is. The ANA shows I can have a few different autoimmune diseases however It’s still possible to not have any with it. I imagine I’ll be doing more testing. Either way... I have come to the realization that I need a life change. I have not been eating right, drinking & not exercising which is exactly how you get diseases and cancer. I found Dr Brooke Goldner online, check out goodbuylupus.com and smoothieshred.com. She had lupus bad and is now completely healed for 14 years. I’ve decided I’m going to fight this. I’ve been praying a lot and watching all the videos and joined the FB group. It’s amazing all the diseases that she has helped cure with her method from all over the world. I’m sorry I don’t live in your area & can’t answer your question. I just wanted to share what I found it’s given me hope and along with prayer & changing my lifestyle I plan on beating whatever this is. Best wishes.

[Oshgosh]

Sorry, I don’t know the answer.

I had an admission late 2018.

Diagnosed withbNSIP ( lungs)

Whilst in hospital,I saw a rheumatologist,I was amazed by how much he knew about my conditions.

A few months later ,I was diagnosed with lupus, I’d had loads of symptoms over the years, up they’d been treated on a symptom by symptom basis.

Re referring you to different clinics,I’ve had loads of tests to exclude all sorts ofsyptoms.

It all seemed to take forever,but everythingI was tested /scanned for came back negative.

They have now concluded my symptoms are down to lupus.

[MEGS53]

Hi Kelly. I live in NE England and see a very good NHS rheumatologist at a local hospital. I can give you info if you PM me.

[kelly8975 in reply to MEGS53]

Great thank you I’ll Message you now

[Amakura]

Oh Kay, I'm so sorry to read what you are going through. Your story is not unusual and a lot of people, including myself, have experienced this as well.

I saved up and went to the Lupus private clinic in London Bridge. The best money ever spent. I can recall being at my last tether and being relieved that the consultant actually listened to me. Yes, listened for once. I thought it was only Lupus but I was diagnosed on the day with secondary sjogren's as well.

Tip: if you do decide to go, in order to save money as everything adds up when you are there, make sure you collate every single test result known to man for the appointment. Come well prepared. Write bullet point notes. Take your time when speaking. If you can take someone with you, that also helps as well. Unfortunately I didn't, so the consultant had to double up as my buddy, bless him😂

Caveat: They might require a urine test but it's not extortionate in cost. Unfortunately, that's something that will have to be very recent.

Who should you choose? Read their bios and collate various recommendations and make your choice based on your end goal.

Good luck and remember, you will be okay. All will be well. 😊

[susielucy59 in reply to Amakura]

Good morning Amakura; please would you be very kind and let me know what the name of the consultant was that you saw at London bridge? I seem to be going around in circles trying to get the correct diagnoses and treatment. Hope you're treatment plan is working well, best wishes xxxx 😀

[Amakura in reply to susielucy59]

Hi susielucy59 I've just sent you a message.