Got a diagnosis now stumped?

[hunnybuns79]

Thanks to all who replied to my question about getting diagnosed it's been a great help! As I have now been to see rheumy I am now more confused, after chatting to her about all my symptoms etc. she has said I have fibromyalgia and discharged me. I'm not sure to be relieved to get a diagnosis or not I am already taking codeine for pain and have prescription for amitriptyline but quite honestly can't take it as I have 2 young children and it just worsens the symptoms but she insists I take it in the afternoon of which I have done but can hardly function so not sure to persevere with it so apart from that the doctor will now deal with me and not sure what other meds are available until I see her. she did say the positive Ana tests which I had didn't apply as half the population would have them positive?

In a way slight relief as have a reason for my constant shoulder pain and bad posture due to tired muscles as have had scans and physio to no avail so it sort of makes sense but I really did think it was lupus.

Is there any other blood tests that indicate lupus? I'm thinking should I have not had them to rule it out or should I just accept a professional diagnosis?

Thanks

Vanessa

[Paul_Howard Partner LUPUS UK]

Hi hunnybuns79 ,

I'm sorry to hear that you haven't been able to tolerate the amitriptyline. To find out about other possible treatment options for fibromyalgia you can go to fmauk.org/ (they also have a HealthUnlocked community at healthunlocked.com/fibromya...

The ANA test isn't sufficient for a diagnosis of lupus because it can be positive in a number of other autoimmune conditions and about 5-10% of the healthy population. The anti-dsDNA antibody test is more specific to lupus and a highly positive result for this is very strong evidence to indicate lupus. You can learn more about the diagnosis of lupus and the blood tests involved in our factsheet here - lupusuk.org.uk/wp-content/u...

If you are unsatisfied with your current diagnosis and treatment plan, you could ask your GP to refer you for a second opinion. Perhaps you could ask to be referred to a rheumatologist who specialises in lupus? If you let me know what area you are in, I can provide you with information about any specialists we may know near to you.

[Tay171 in reply to Paul_Howard]

I'm in Northern Ireland are the ant specialists here?

[Paul_Howard Partner LUPUS UK in reply to Tay171]

Hi Tay171 ,

Yes, there is Dr Michelle McHenry at Musgrave Park Hospital in Belfast and Dr David Armstrong at Altnagelvin Area Hospital.

[Tay171 in reply to Paul_Howard]

Thank you!

[hunnybuns79 in reply to Paul_Howard]

Thanks Paul, that's very helpful I am happy for the diagnosis and relieved to put a name to it I think just because there are no specific blood tests for fibromyalgia I can only rely on her expertise on it, had I been tested for bloods for lupus and it was negative and then diagnosed with fibro I would be much more accepting if you can see what I mean?

Not sure weather I will ask for a second opinion just yet but what I will be doing is charting more accurately in a diary on flare ups and lifestyle to see if I can see if there's any connection somehow, it's the time in between I kid myself thinking it won't come back as I feel so normal, this is what my husband can't understand why for weeks and months sometimes I'm fine and the next I'm housebound virtually, I just hope I can learn to cope as I don't feel like I am at the moment 37 years old, don't look it but when I'm bad I have less energy than my 74 year old mother in law!

I am going to look at the fibro link for more information and more support so thanks Paul!

Vanessa

[Paul_Howard Partner LUPUS UK in reply to hunnybuns79]

Hi hunnybuns79 ,

I can understand why you would want lupus to be ruled out as a possibility. There is always a chance that you could have a joint diagnosis as around 10-20% of people with lupus also have fibromyalgia.

Keeping a diary of your symptoms is a great idea and will be helpful for future appointments and investigations.

The lupus specialist I know of nearest to you is probably Dr Bridget Griffiths at the Freeman Hospital in Newcastle.

[hunnybuns79 in reply to Paul_Howard]

Sorry Paul forgot to say i'm in County Durham.

[misty14]

Hi hunnybuns

Sorry to read your having diagnosis problems but your doing the right thing keeping a diary of symptoms. As the ANA test was positive, as Paul as greatly explained , it means there's something wrong with your immune system without being specific for lupus. Your Rheumy should have also done the more specific antibody lupus tests. Did she?. I do feel instead of discharging you she should have been willing to do a watch and wait on your symptoms to see if anything else develops. Had you been getting other lupus like symptoms, eg rashes or hair loss?. If this does happen then I think you'd be right in seeking another Rheumy opinion. Good luck X

[hunnybuns79 in reply to misty14]

Hi Misty,

That's what I mean I was stumped when she said ignore the 2 positive ANA tests I had as half the healthy population would have them, I was kind of thinking why would the doctor refer me then I already see a different rheumy for my thyroid anyway, as I said to Paul I'm not disputing her diagnosis as being correct I can see I have every symptom but why not confirm it's not Lupus by doing more specific bloods to rule it out I wasn't aware at the time of being in her office there was any, I don't have a rash only keratosis pilaris on my face, arms, back and legs and yes hair loss has always been a big problem I am taking kelp now which has massively helped, what's worse is the stomach and bladder problems although I have cut down massively on carbs and It has definitely helped ... i'm keeping check to see what works best for me as everyone has a different experience. x

[LottieD]

Sorry to butt in. When my letter came from neurologist last year it had on it watch and wait. When I asked her about this she said it was something secretary puts on... what? I now go to dermatologist next week. Please Paul can you suggest a specialist in Hughes syndrome In the northwest asking for second opinion from rheumy. LottieD.

[Yllek in reply to LottieD]

I've sent you a private message, I'm in the North West and have a great Dr x

[Paul_Howard Partner LUPUS UK in reply to LottieD]

Hi LottieD ,

Hopefully Yllek has been helpful in recommending a doctor. I do not really know many specialists in Hughes Syndrome, but if you contact APS Support UK (aps-support.org.uk/) I'm sure that they could help with this.

[Sara_A]

I have to take my amitriptyline an hour before bed as it makes me drowsy so can't take it any earlier. I also have 2 very small children and could definately not function taking them in the afternoon! I was taking morphine for pain but have changed to patches as the oral morphine was too much I couldn't drive etc but needed something for the constant pain

It's all very frustrating took me years to get a diagnosis went thru hundreds of Drs!