Hello all and thank you for reading my post
I have fibro and ME abd have recently been to see a rheumatologist.
He ordered a barrage of tests and what cane back was ANA positive at 1:80 nucleolar
And
Anti SM titre 1:40 borderline he doesn't seem overly concerned also possible Malaria flush.
He said he will see me in a year !!! Can any one explain to me what is happening with regards to these results and is seeing him a year the right course of action.
Thank you in anticipation of you reply xx
Hi, were you given any treatment?
What's SM?
My ANA is 1:160 and I was seen every three months after diagnosis at a specialist Lupus Clinic and have been for the last 5 years.
Hi fiddlers
The problem with ANA is it's non specific for Lupus. Your other test is more specific for it but being borderline your Rheumy thought you'd be ok for a years review. I don't think that's right and my advice to you would be if you develop new symptoms or your usual ones get worse then ring the clinic and ask for a cancellation to bring your appointment forward. These illnesses can change quickly so I think you should have been seen sooner. Did he suggest any treatment?. Hope I've helped X
Thank you both for your reply I will keep an eye out for symptoms and return to the consultant if they flare up or become worse . The problem is I been having symptoms for a while and have been feeling pretty poorly on and off but when you go to see anyone , Gp or consultant you sound pretty mad rambling off a load of symptoms or forgetting to tell him some symptoms. With the fibro and Me it's hard to know what is flaring .
Again thank you for your replies
Fidders x
Hi fiddlers
You having symptoms on and off for a long time proves that there is something going on with your immune system without the Consultant knowing what just yet!. Your blood results prove this too which is why he was wrong to let you go a year before another review!. A lot of people on here have been diagnosed with ME first and then had it changed to Lupus later when things have changed. I'm pleased you will go to the clinic sooner if you worsen. It can be a long battle to diagnosis and treatment but you'll get there. Keep posting. X
Hi Fiddlers. Been there, got the T shirt.
Listen, having been through the mill you are entering. Speak up. Stand up.
Whenever you go to any appointment, take a list.
1signs and symptoms, how you feel
2how each affects you, how you feel
Look up your test results as far as you can
Read up the conditions they label
Investigate on the net by putting in your symptoms. I dont need to tell you to be sensible, cos none of us want these b.....y diseases, but read with care and common sense. Challenge the findings.
Easy to say I know, but I have been in a battle for years, latterly four months, talking to two morons and the organ grinders monkey. You can be heard.
Tough though it is we need to be our own advocates. Take someone with you, every time. It helps.
Awful though you feel 99% of the time, no one has a vested interest, in NHS, in you except you. All these cuts are reducing our investigations unless you push for them.
This charity is a godsend. Read all their free literature, and their books if you can.
If you quietly go away like a good person, nothing nothing will happen next.
Sorry if this sounds like a rant, but I, like others on here, are wearily passionate about our not being listened to and heard.
Come here whenever you want, we understand, we support you. Others find it hard to really understand these conditions. WE KNOW.
I wish I could frog march you into your next rheumy appointment with lists in hand. The Dr would quake just looking at my fizog! Sloppy answers will not do, vague replies, will not do, no investigations WILL NOT DO. You are worthy of care and treatment. You are entitled to it.
Its so hard and so stressful, caused by them, to do this but if you dont, who will? Try to get your answers sooner rather than later when you have gotten worse, God forbid.
After all I have been through to be heard, be referred to Lupus, Heptologist specialists I am being heard, am having investigations. It has been a long road. TODAY I HAD A PIP ASSESSMENT WHERE THE LADY REPORTED THAT "You are a poorly lady" Thats hard to hear. Its true, I feel poorly, but who knows how I might be feeling had I not got low enough to come on here and howl in pain and frustration? All the help and advice I got woke me up. I am vindicated, but I am so much further down the road being now heard, from where I started repeatedly going to doctors complaining of all my symptoms and being ignored. Sad but true. Please dont wait. Note your next symptom and get to your GP. I did, eventually, with a short speech written down demanding a referral to someone who really knows about this stuff. A bit little, a bit late but it worked.
I do hope this helps you or others in a similar situation. There is a vast amount of love, help, experience and advice on here waiting for you to tap into.
Please take care of yourself.
Lots of luck. Lots of support. Lots of courage to you Fiddlers.
YOU ARE NOT ALONE
Love
⚽️
Thank you so very much for sharing i appreciate you getting back to me. What you said is so true the GP visit demoralised you so much you scurry away lick your wounds and mentally prepare yourself for the next visit . I am going to take this in hand write down all my symptoms and go armed with information and knowledge . Thank you so much you are totally right and I hope your health has stabilise gentle hugs Fidders xxx
Hi fidders , you've received some great advice from the community. If you are unsatisfied with this plan set out by your consultant, you are able to ask your GP if they can refer you to another consultant for a second opinion. Another year is a long time to wait without a diagnosis or treatment for your symptoms.
If you need more information about lupus and how it is diagnosed, you can request or download a free information pack from our website at lupusuk.org.uk/request-info...
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