Frustrated!

[cathylou]

So mad at myself. 2-3 years of intermittent issues, neuro dismissive once it was confirmed not Ms. Bad issues arose April, gp did bloods, folate and one other abnormal and so referred to rheumatologist. Saw him Monday and after joint swelling for 2 months I would be having a better day Monday! Haha! He threw me off as the 1St thing he said is 'so here about lupus' - news to me! He did a quick fire question round from pre-established questions and was going fast! I was totally confused for much of it, said no to headaches, said work was fine when I've not been there due to the pain and fatigue! Confusion got worse Tuesday, had to speak to myboss but struggled to complete a sentence. Apparently I was slurring too. Thinking more clearly today and just keep thinking back to appointment and how I obviously didn't give him a true picture. Question is, would he have noticed I was confused? He did look at my husband a lot! And has referred me for mri. The abnormal test that gp did was anti dsdna. I had a tonne of bloods yesterday, but I'm worried that now I'm in less pain maybe nothing will show and I'll be back to square one! Any words if wisdom would be greatly appreciated! X

[Buffy14]

Abnormal dsdna usually does indicate lupus it's the only disease that has it . Brain fog and confusion does happen sometimes with lupus and many of us have had an MRI test and so don't worry too much , you can ask the administrators on here for lots of information about lupus and I'm sure there is one about brain fog . You do sound like you have the symptoms and hopefully when your blood tests come back they will put you on treatment to help with your symptoms , let us know how you get on , take care .

[cathylou in reply to Buffy14]

Thank you. If you definitely have lupus does it always show on mri? Just found out the dsdna one was 24.5 but it doesn't mean anything to me?

[Buffy14 in reply to cathylou]

Hi , a normal dsdna is about 9 in a person who doesn't have lupus as yours is raised to 24.5 that is why they are testing for lupus . 24.5 isn't very high mine was 120 when I was first diagnosed 16years ago my lastest result at my last check up was 34 and it has varied a lot over the years has been in the 50s , 60s 70s and 80s , it goes higher during a flare but that's different for everyone some people's dsdna doesn't change with a flare . As far as I know lupus doesn't show on an MRI the doctor will probably be doing test to rule other things out did he not say what the MRI was for ? . Lupus can affect different parts of the body but not everyone has lupus that is attacking the organs . In my case they did a kidney biopsy as they suspected I had lupus in my kidneys as I had blood and protein in my urine . The biopsy showed that lupus had caused damage to my kidneys . Maybe you could ring your consultants secretary and ask why you are having an MRI . Some hospitals have a lupus nurse that you can speak to maybe you could ring and ask them . I hope you get some answers soon , the consultant should send a letter to your gp about the consultation he had with you and any results and future treatment plan , you may receive a copy , at the hospital I go they ask if you want a copy . X

[cathylou in reply to Buffy14]

Thank you for your help x

[cathylou in reply to Buffy14]

He said the mri was to look for lupus on my brain?!

[Buffy14 in reply to cathylou]

It must be possible to see it then , sorry I didn't know that . Have you had a copy of the consultants letter to your gp now ? You mentioned you saw a neuro in the past who checked for MS was that ruled out with an MRI test ? Do your symptoms of confusion come when you have the other symptoms , joint pains etc and then go away when you are feeling better ? I have had a few brain scans of my brain but not for lupus I don't really know anything about lupus on the brain I only know that a lot of people get brain fog which causes memory issues and confusion for some people . Maybe you could do another post titled ' lupus on the brain has anyone had this ? ' and then anyone who has had that problem would reply to you and give you advice . Hopefully the MRI will rule this out . Have you had a date for your MRI yet ? Please let us know how you get on . If you do another post I am sure one of the administrators will reply to you , Paul Howard is the main administrator on this site . I'm sorry I can't be of more help , you could also do a search of old posts on the subject of lupus and the brain there may be some help on there . I hope you are feeling better soon and you get a diagnosis and the right treatment to help you x

[cathylou in reply to Buffy14]

Hi, I missed this reply somehow.

I've been confirmed and started hydroxychloroquine today. Just wrote a long post actually. I've spoken to rheumatologist since I posted and the main reason for mri is the facial palsy. Yes had mri previously to rule out ms. Neuro was convinced that was it but when mri was clear I was dismissed despite still being ill. But, finally got a diagnosis. It's confusing, I'm relieved I know what it is at last but it's scary too. My life has drastically changed in the space of a week. Told my employer and two days later got sacked. Thanks for your advice, really appreciate it xx

[Buffy14 in reply to cathylou]

How long had you worked for your employer ? You have rights surely he can't just sack you because you are ill , speak to acas they will tell you what to do lupus is classed as a disability in employment law so he has sacked someone for being disabled which I am pretty sure he can't do , hope you are feeling better soon , it takes a couple of months for the Medication to start working properly so hang on in there x