New here advice needed

[Ryanmac84]

Hi all 32 year old man recently tested high on anti DNA test told could have lupus been referred to ruematologist .I was at sleep apnoea clinic and doctor tan tests after me complaining of loads of other problems .Constant sore burnt throat reflux hair loss abit of raynauds in winter headaches etc .Scared out of my wits as you can imagine I was expecting to have that show up in a test.Dr who ran tests in respiratory clinic was brilliant phoning and explains but it's not her field .I have had zero information from my own GPs .I struggle badly with anxiety and this has not helped as you can imagine lol.

I'm particularly worried about my urine being off colour for a long time and smelly .Conained of this before and none of my symptoms seemed to have been picked up by a Gp.They have Put everything down to stress probably sick of hearing from me and can't blame them to be honest .The more I read about damage to kidneys etc the more worrying and scary this seems to be .

I'd appreciate any advice from people out there who have been in the same position as me waiting to be seen by rheumatologist .

Thanks in advance and Hoping to have a wee yarn with others on here cheers ryan

[Dion3844o1]

Hi I'm new to this also wel I say this I new something weren't right I haven't got lupus but I did feel as though I had a life sentence over me I no how you feel but I've done my crying although I'm sure there's more to come but I'm not giving up without a fight ul be ok it just needs to be absorbed properly mine been going on for 3 yr so far although the Drs didn't even realize till recently what I have mixed connective tissue disease/lung disease I hope u be ok easier said than done chin up dont give up.😊

[Ryanmac84 in reply to Dion3844o1]

Thanks for the reply .Ive new I haven't been right the past three four years .Terrible tingling headaches nonstop reflux trouble sore throat stomach noises etc despite being on ppis for years !Had strange hair loss aswell came out in blepharitis in eyelids and about six years ago developed psorasis out of the blue .

I have had trouble with my neck for years have abit of degeneration in the neck picked up by MRI years back and arthritis in shoulder after shoulder surgery .I have been getting seen for sleep apnoea another condition my gps thought I coudnt have seen as I look slim enough !So you can imagine I was shocked to be told that the test indicated that I may have lupus .

The dr who ran the tests was brilliant I'm now glad that she did as I woudnt have known what the hell was goin on .Still scared tho to be honest .Just Hoping there hasn't been any organ damage if it turns out I have lupus .Been told my levels were high for a man of my age .

I have been driven insane with anxiety due to strange symtoms and I now belive that if it turns out I have lupus then that will be an explanation as to why my anxiety has been so bad .

One gp of mine upon referring me to dermatology awhile back had wrote on the referral that I had a background in health anxiety lol !When I see this man again il be making a point of mentioning this so-called health anxiety to him !

[Dion3844o1 in reply to Ryanmac84]

Hope all goes well now u know wats wat take care ☺

[whisperit]

Hello and welcome Ryan,

I was in a similar position 2 years ago, but didn't have as long a history as you. But I was diagnosed with Interstitial Lung Disease and Undifferentiated Connective Tissue Disease. I'd never heard of either of them and the first forum I looked at for ILD had a post saying something like "My Dad was diagnosed with this last year and died 6 months later". So you can imagine how I felt!

Since then, the medication I've had has been very effective in mending the lung disease and I've realised that this whole business is a marathon and not a sprint - although the threats seem very immediate and scary at first, it turns out that the meds are usually pretty good at stopping any sudden disasters.

On the other hand, you may have to learn to live with a lot of uncertainty and a lots of weird symptoms that no-one really understands....this forum is really good place where everyone helps each other to do exactly that.

One last thought - if you find the anxiety of waiting for your specialist appointment too much to handle, it may be worth finding out if your consultant also sees people privately. A lot of them will do this (it costs about £200) and will then put you onto their NHS caseload for future appointments. Best x

[Ryanmac84 in reply to whisperit]

Thanks for the reply .Do you have lupus ?I didn't see you mention lupus so that's why I'm asking .The dr who ran the tests obviously thought all my complaints and symtoms were strange for a man of my age and decided to run the tests .Im glad she did now .She said that my anti s DNA test was high they had me redo the test and it came back high again.She said that was a specific test looking at lupus and has referred me to reumatolgist.

I have chronic head aches that have never been explained .Did have an MRI of the brain about one year ago and it was normal.Neurolgist proscribed amitrypline been on it from last June does nothing to help the weird nerves and tingles I feel.

So many other problems tho constant raw sore throat reflux water coming back up or won't go down right ,GP said not to worry as previous endoscopy about four years ago showed only inflammation in stomach and said not much could have changed .Pain and stiffness in neck developed the cold white fingers in winter ,blepharitis in eyelids ,strange hair loss ,tiredness all of that along with the pain just wears me down .

Doctors had been blaming it all on stress but looking at things now I'm hoping to get an explanation as to why I've had all these new conditions the past several years .Be differnt if you were born with skin issues like psorasis etc but when they appear alongside other problems I'm angry now my gps didn't look into things further !

The dr that referred me said Luos was rare in men never mind young men like me which worries me .Im particularly worried about the colour of my urine and if possible damage could have been so done .I will try and find out how long I have to wait to seee consultant and would consider paying to go private .Just hoping it l turns out to be a condition that I could live with if you know what I mean

[whisperit in reply to Ryanmac84]

As you know, lupus/SLE is one of a whole range of auto-immune disorders. A lot of them are very, very similar but not all of them meet the diagnostic criteria for the lupus label. A lot of people on this forum have other diagnostic labels like MCTD (Mixed Connective Tissue Disease), Sjogren's Syndrome, or UCTD. But they are all closely related. When he first saw me, my rheumatologist put me under the heading of "possible lupus/Sjogren's and ILD". Later, this was changed to UCTD, then "Fibromyalgia with significant auto-immune features" and now I seem to be "Fibromyalgia/ UCTD". In any case, the basic disease process and - more importantly - the basic treatment is the same in all of them. So I have stopped worrying about the label!

I have read on the St Thomas' Lupus Centre site that we men tend to present with slightly different symptoms to women, and we are definitely in a minority here. One blessing is that I don't have to pretend to care about football or cars

[Ryanmac84 in reply to whisperit]

My respiratory consultant who ran the blood tests on me had said that lupus was known as the great imitator .Did you have an anti s DNA test .My levels were high and on the repeat afew weeks later they were the same again.She indicated that this was a test for lupus and that she was sending me onto reumatologist .

It's funny you say about men being a minority here ,although it wasn't here field she had experience of it having worked in Trinidad and said that it was very rare in a man of my age .

Does the high level aka postive result on a antidna test confirm lupus do you know ?Ive read that test is nearly 100 percent accurate in regards to lupus ?Its very stressful for me and I'm abit angry that all my complaints and new health problems the last several years have been blamed on my anxiety !

Il be first to admit that I'm very anxious but is it any wonder the trouble pain and discomfort I've been in if it turns out I have some auto immune disorder or disease lol Bloody health anxiety my backside

[whisperit in reply to Ryanmac84]

My ANA was strongly positive, but it is not specific to lupus The test you mention is probably the ds DNA antibody test I guess, which is very specific? If you havent already taken a look at the leaflets on the home page here, they are very helpful

[Ryanmac84 in reply to whisperit]

Yes it was the anti s DNA test which came back high twice this the referral to rheumatology.You can imagine my shock seen as I was there for sleep apnoea issues !I think that dr done what my gps should have done along time ago and tested to see what the bell was goin on .She seemed to pick up on spots I have on my face and nose these busted blood vessel like spots .I don't seem to have that butterfly rash tho .Suppose everyone is differnt but I'd like to know from others that if you tested positive like I did twice on that particular test should I prepare myself for the worst I.e being diagnosed with lupus ?

[jennyall12]

Hi Ryan. Get your head up : ) You will be fine, either way your getting facts from the doctor and that is a great step! Yay for that : )

[Ryanmac84 in reply to jennyall12]

Thanks for taking time to reply Jenny .Have u had the anti s DNA test done yourself ?

[Buffy14]

Hi I think if you have a high antidsdna that it most likely will be lupus I had a result of 120 when I was diagnosed they said because of that result they were sure it was lupus , do you know the number or did they just say it was high ?

[Buffy14]

Can I add that because of my high antidsdna I was seen very quickly so you may not have to wait long , I was asked to stay in hospital for a few days while they did further test , they suspected I had kidney involvement and did a kidney biopsy which confirmed this . Try not to worry too much as stress will make things worse . Many people get very frustrated because they have waited years for a proper diagnosis of lupus , it looks like your diagnosis will be a quick one because of the antidsdna result which means you will get treatment straight away which will help you . Lupus is controlled with medication and hopefully you will then start to feel a lot better , take care and let us know on here how you get on , this forum can be very helpful when you are feeling stressed , ask as many questions as you like you will always get answers here , take care

[Ryanmac84 in reply to Buffy14]

Hiya buffy I can't remember the number given but was told that it was high for a man of my age .The referral was done last week after the repeat bloods were the same so I hope that I am not waiting to long to be seen .Ive had all these differnt problems the past few years and I'm abit angry that it took a respiratory doctor to investigate what was going on .I suppose if it is lupus I'd just have to deal with it just hope it's something that I can live with and not effect life expectancy

[Paul_Howard Partner LUPUS UK]

Hi Ryanmac84 ,

Welcome to the LUPUS UK community forum. I hope that you find this a helpful place for support and information. Have you had an appointment come through for the rheumatologist yet?

Have you had any urine dip-stick tests done? Or do you know if they checked the levels of creatinine in your blood yet?

If you need any information about lupus, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

If you need anything else, please let me know and I'll do my best to help.

Please keep us updated with how you are getting on.

[Ryanmac84 in reply to Paul_Howard]

Thanks Paul no I haven't had a appointment come out in the post yet .This all came to light over the past few weeks after my sleep apnoea consultant ran tests on me .Said that the lupus one was unexpected and she would be referring me on .I had urine took afew months back I think not to sure when.Around three weeks ago I had to go to a and e due to chest pain and throat kind of like a reflux problem ,one of my main problems .I had bloods took there do you think if there had of been a problem with my kidneys that something may have shown up in the A and E tests ?My bloods were repeated two weeks ago and anti s DNA was still high .

I had bloods took again last Thursday and I'm trying to speak to the sleep apnoea doctor to see if they have came back again.

The urine is a concern been off and smelly for months now and I'm abit worrried about it .

Thanks for the reply

[Paul_Howard Partner LUPUS UK in reply to Ryanmac84]

To be honest, blood creatinine levels are often normal in people with active lupus nephritis and so an abnormal result usually indicates that kidney damage is already severe. That is why it is important to try and diagnose and start treatment before this may occur. If they tested for creatinine and it came back positive it most likely would have been flagged to you - but I'm not sure if they would have routinely tested for it.

I'm not sure that smelly urine is an indicated for kidney involvement in lupus. The key indicators would usually be the presence of blood (not usually visible) and protein (which may cause frothy urine). Smelly urine could be a symptom of a number of different causes. You can read more about this on the NHS Choices website at nhs.uk/conditions/smelly-ur...

[Ryanmac84 in reply to Paul_Howard]

Just been told that the consultant looked at my referral today and said that I would be seen probably in 3 months ?I was told most people here in Northern Ireland are waiting over 2 years for rheumatology appointment .It appears I will be seen at a lupus clinic .Im wondering if I should consider paying private first.

The girl on reception at rheumatolgy only received my referral today and by chance the consultant was in the office so she passed it to her and she rang me back .She did not grade me as urgent so could this be a good sign ?

[Paul_Howard Partner LUPUS UK in reply to Ryanmac84]

Hi Ryanmac84 ,

I have heard from people on this site that waiting times for rheumatology in Northern Ireland can be very long so three months is relatively good. You may be able to get in sooner if you check with them periodically about cancellations.

[Ryanmac84 in reply to Paul_Howard]

Paul should the fact that the consultant did not grade my referral as urgent put mind at ease with regards to worrying about possible damage .?Just wondering when the tests were ran on me you would think that kidney function etc would be among those bloods done ?

[Paul_Howard Partner LUPUS UK in reply to Ryanmac84]

Hi Ryanmac84 , I'm afraid that I don't know the answer for you. I would imagine that by not marking your referral as urgent your doctor is fairly content with your blood test results at the moment. I do not know whether your kidney tests would have been done as routine I'm afraid.

[Ryanmac84 in reply to Paul_Howard]

I suppose I have to be content with that in the meantime Paul .

I have these spots on my face. One on cheek under eye Another on. One and one on forehead .They are like busted blood vessels .Have you heard of these .The doctor who ran the tests seemed to pick up on those

[Paul_Howard Partner LUPUS UK in reply to Ryanmac84]

Hi Ryanmac84, I'm afraid that I couldn't advise you about what these spots may be because I'm not medically trained. There are lots of skin manifestations possible in lupus and overlapping conditions such as vasculitis. You can read more in our booklet at lupusuk.org.uk/wp-content/u...

If you are concerned about them, perhaps your doctor can refer you to a dermatologist?

[Buffy14]

All those things will be checked by the rhematologist they always ask for a urine sample and check it , have you not asked your GP to test it they usually have test tubes so that you can give them a sample you could have a kidney infection that needs antibiotics . Don't be worrying about life expectancy the treatments for lupus are better now than years ago and improving I know a lady who is 84 years old and has had lupus since her 40,s .

[Ryanmac84 in reply to Buffy14]

I'm just abit concerned having been told today by the receptionist I called at the place I have been referred to that I will be seen in three months .As I was on the phone the receptionist said the doctor was in the office and passed my referral today here to grade .They only received the referral today and the consultant did not grade it as urgent but said I'd be seen in three months ?Should I go private .If based on the tests a consultant thought there may be organ damage would they not see you quicker do you think ?

[Buffy14]

Yes I think they would in the meantime go and see your doctor to check your urine if you have an infection they will give you antibiotics to clear it up you will feel a bit better than while waiting to see a consultant .

[Ryanmac84 in reply to Buffy14]

I'm sick of being fobbed off by my doctors .When he phoned me yesterday after I rang to get him to do so because my consultant in the respiratory clinic who ran the test phoned him .I wanted to know what the conversation was .He said that lupus was a thing affecting the joints and never mentioned anything else .He said I don't know why they ran them tests .I had to tell him that the reason the tests were ran was because that doctor listened to me and my symptoms and maybe. Guessed something was a miss .I remember her paying attention to these spots on my face like busted blood vessels .Have you heard of those ?

[Buffy14]

Lupus does not only affect joints at all it can affect any organ of the body and skin is one of them . Gp,s are useless when it comes to lupus they know nothing about it , hopefully when you get to see a consultant you won't need the GP , I rarely see my gp as I go for check ups every 4 months with my consultants , rhematologist and renal , it is a rare disease and even some rhematologist don't know everything about it unless they specialise in lupus , can you not change to a different gp if the one you have has not listened to you regarding your health issues .