possible srogens/lupus

wall1409

Hi folks I havnt been on for a while. Its just a quickie. I had a blood test last Wednesday to test me for srogens, I was told results would not be back for a fortnight then on Friday morning 8:30 I received a text from docs asking me to make an urgent appointment as a result was back and further testing was needed which I go next Wednesday. Has this happened to anyone else. Does it mean im positive. Dic knows I have an autoimmune disease but not sure which one until my eyes started experiencing blurriness really bad now. Seen a rheumi 3years ago but as I wasn't positive for inflammatory arthritis he dischared me. I now have dry mouth eyes daily chronic diarrhoea stomach pain regular esophageal spasms acid and really itchy often rashy skin. Any advice would really be appreciated.
Thanks
Wendy

dreamdaisy

Hello, I'm not surprised you would like an answer but how on earth would we know? :? We're not practising docs, just practising poorly people. I've had urgent recalls to the GPs before now to find it a total waste of mine (and their) time because their interpretation of results was very different to that of the hospital. The dry mouth etc. sounds like Sjogren's but it could also possibly be due to other things. I can understand your concern, and I know it's silly to tell you not to fret, but honestly we can't answer this. Please keep in touch to let us know how things progress because then we may be better placed to help. I wish you well. DD

stickywicket

I don't have Sjogrens or Lupus, Wendy, so can't help on that front. However, if you have a good doc they do sometimes ask us to make urgent appointments. I've had that sort of thing once or twice and never found the outcome that urgent though I guess it could be so should be treated as such. Remember they deal with all sorts of people and some might just ignore a simple request. Try not to worry. I hope it's good news. Please keep us updated.

wall1409

Sorry to be a nuisance I like most of you have been and still am going through so much. Had all kinds of tesrs even for MS my mobility is immensely restricted. Was hoping maybe someone whi has gone through this srogens/lupus testing may have been able to help. Should know soon though as GP has already said he is going to refer me to another rhumi for second opinion. Just concerned as I already wear bilateral hearing aids and now my sight is greatly affected making it even harder in my full time office job

stickywicket

You are by no means a nuisance, Wendy. You have a great deal to cope with and the prospect of a new diagnosis must be scary.

All I know of Sjogrens is that it makes the eyes dry (and possibly other areas) and shouldn't be neglected as neglect can cause actual damage to the eyes.

All I know of Lupus is that it's auto-immune, uses much the same meds as the rest of us auto-immuners and, in the case of a relative, is very well-controlled by the meds. These people will be of more use to you http://www.lupusuk.org.uk/ Also, you could try the Arthritis Care search engine.

dreamdaisy

There are many users of the forum who log in when they want something so it cannot be guaranteed that that those in the know will be around. You are certainly dealing with a great deal and yes, it's about time you start getting some answers which will take further investigations - always a challenging time. I am surprised that the first rheumatologist dismissed you, I have an inflammatory arthritis which is a sero-negative kind (there are quite a few of those) so a second opinion sounds like a plan. Has your GP suggested any cause for the stomach and skin troubles? DD

wall1409

Morning DD. My GP has suspected Lupus for a long time but its not easy to diagnose sorreally hoping these new blood tests may hold the key. I've been given a thicker gel to use in the eyes at night to help moisture them but worried of possible damage. Main issue I use computer screens daily in my job and struggling to see screens certainly feeling my working days are now under threat.

dreamdaisy

And that's an added worry, yes? In what ways are you struggling to see the screen? Are the office lights too bright? I'm hoping we can find an answer to this. DD

barbara12

Hello sorry I wont be much help but please dont think you are a nuisance, we are all here to help one another and lots of people have a break from the forum for one thing and another..the only thing I know about Lupus is my hairdresser has it, and copes very well on the meds she has..please let us know how you get on x

dreamdaisy

Hello, if I have my sums right today is the day for your further tests, yes? If so I wish you well and please update us as and when you can. DD

Boomer13

Hello Wendy;

I have psoriatic arthritis and a neuropathy that remains undiagnosed. I went through a long period of limbo and indecision by docs over what it was I had. Initially, I was tested for lupus because of the neuropathy, hair loss, sun sensitivity, Raynaud's, muscle cramping. I was negative for all Lupus blood tests and after months of watching my kidney values, it was decided it was not Lupus. Sjogren's test was negative too.

Last year I developed vestibular problems and hearing loss in one ear which were decided after tests to be related to the neuropathy. I have a dry eye/blurry vision problem too which is now diagnosed as relating to a chronic blepharitis due to psoriasis of the eye lids, and the blurriness is due to cataracts developed from prescription steroid use. I had an MRI of the head this past summer which showed no signs of MS or tumors to explain the neuropathy.

Waiting and worrying with difficult and scary symptoms can be a very anxious time and it's very, very difficult over long periods. I guess I have become resigned to not knowing what is causing the neuropathy. My advice to you is to try to stay positive and keep the worrying to a minimum. It is as fairly useless emotion, only causes stress, and will gnaw away at your mental health over time. Practice patience and seek evidence-based answers from medical professionals, with second opinions if needed. Additionally, it is a good idea to keep a symptom diary if you have multiple troubling symptoms.

Getting a diagnosis can take a long time while docs gather the information and get a firm picture of your symptoms over time.

Take care,
Anna

wall1409

Hi all. Bloods are positive high esr also. Pain clinic sister has made urgent referral to rheumi. Feeling very unwell luckily its my last week at work then off for 2 weeks. Pain clinic have advised I seriously look into reducing my hours of work so I will look into pros and cons as 13 yrs till I retire and knock on affect with pension. My mobility is severely reduced, apparently radio frequency will increase pain fir 3/4 months then hopefully may work but neck/shoulder pain and wrist fingers doesn't help. Question raised about dry eyes I work from home 3 days a week so can't blame office lights and eyes are dry/blurry all the time now. I try not to let this get to me as I don't want to be negative for my family's sake but its difficult as you all know. More worrying is I may have passed this to my daughters. Thanks for all your comments. Its lovely talking to people whi understand xx

dreamdaisy

This is sounding more and more like an auto-immune inflammatory arthritis to me so the sooner you get to see the rheumatologist the better. I remember my ESR and CRP figures being in the 160s and 170s before the current trio of meds brought them right down within a fortnight - now sometimes they are too small to measure which is how I know the meds are working. As for your daughters, well, who knows? They may or may not and at least you are in the know about what has to be done. Don't feel guilty, my late Ma did but it wasn't her fault, she wasn't to know. DD

stickywicket

That's good and bad news, Wendy, but at least you will see the rheumatologist which is the way forward.

I do hope your GP has given you something for the dry eyes (Sorry if you've already said so :oops: ) if only sterile water drops.

Try not to worry about passing it on to your daughters. It's a real risk that confronts all of us auto-immuners but not, I believe, a high one for most.

villier

Sympathies Wendy I know what you are going through, my neurologist is positive that I have Sjogrens(lip biopsy was borderline positive) although the treatment I get for my neurological condition helps keep things under control. I hope you get your Rheumi app soon please let us know how you get on..................Marie xx

theresak

I hope you get your referral quickly - you need to have the high inflammatory levels reduced and a proper treatment plan.

Try not to worry about passing anything on to your children - we`d all drive ourselves mad thinking that might happen. Not every case has a genetic link.

I`m sorry you are feeling so unwell - please try and take some rest whenever you can : difficult I know.

Tezz x

wall1409

Thank you for all your support. Its difficult trying to explain to loved ones as I am such a strong person. My eldest daughter has talked to her younger sister and basically they are supporting each other, which is good. Just hope I may feel better once I'm on correct treatment xx

dreamdaisy

Indeed it is, especially when everything is still somewhat up-in-the-air. I'm not sure if these are of much relevance but have you read two on-line articles called 'The Spoon Theory' and 'There's a Gorilla in my House' ? They provide very clear explanations of what it is like living with a long-term chronic condition. DD