Have no idea what I have?!: Hi to you guys in here... - LUPUS UK

LUPUS UK

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Have no idea what I have?!

meggiemog profile image

Hi to you guys in here!

Reaching out whilst I wait (yet again) for test results. I have had an interesting past 5-6 years with everything from awful backache and sore joints, stomach/ bowel issues, deafness, loss of taste, weird rashes that come and go, and blood tests that keep swinging all over the place. Last March 2020 my digestive system went into freefall, and not being able to see anyone was told I had IBS and I should follow the FODMAP diet - did this, gave up gluten (for good) - and nothing changed at all, then in July my symptoms got worse and worse, to the point I lost 2 stones in weight, lost quite a lot of hair on my head, random swollen glands, sore back and my kidneys started to show they were really really not happy, absolutely tired all the time, mouth as dry as a pharoah's sock and had super dry eyes, was checked for Sjogrens and they did a scan on my kidneys, which didn't really show anything out of the ordinary, Still troubled with symptoms I finally got a proper face to face, where my GP finally decided that they should think out of the box - and send me to rheumatology. After waiting an eternity I finally saw someone in rheumatology, who was really kind and helpful, listening to me reeling off all my symptoms and showing pictures of the random rashes I have had. Upshot is I had X-rays of my hands and a spine MRI. Spine MRI was 5 weeks ago, I called rheumatology secretary after 3 weeks to see if there was any results, to be told that the scan would need to be seen by the MSK radiologist at the next MDT meeting to see how best to treat me. So after the date they told me, I called again - and they said they will be sending me a letter after the MSK radiologist has dictated it and he only works 1 day a week! AGGGGHHHH!!!! So frustrating as I can't sleep a whole night through at the moment, my back is literally killing me!

Sorry for the long post - but I just want to know what's going on - and try to get on with my life! Anyone else had these issues?

25 Replies

Hi,

Defo sounds like you've had a tough time. It took me a few years to get a diagnosis. I too had lots of random symptoms and bloods that were always rubbish. Unfortunately, I had to seek medical help in a different country and was finally diagnosed. If you're not getting anywhere then try that! Good luck

meggiemog profile image
meggiemog in reply to Ant21

Thanks Ant, It's frustrating and to be honest I do have hope this time as the doctor I saw was so kind and for once actually listened to what I was saying. I didn't see the actual consultant but the doctor who works with him - sometimes I think the doctors in training are more thorough than those who have been in the job for years.

No but can’t believe NHS still use such outdated reporting processes - oh sorry that should read I CAN!

I know!!! I am thinking it will be another 2 weeks or so before I get to know provided said radiologist is not on holiday!

Hi meggiemog 🤗welcome to the group 💐 I'm sorry to hear that you're suffering at the moment but it also sounds like you have got the ball rolling n the radiologist will write your results to rheumy..it's just so frustrating when you're in so much pain!! All I can really advise is that you try to be patient..these are extraordinary times were living in right now n things are super slow for all of us.

Try not to get too wound up either coz that will only make u feel worse..stress drives Lupus so the more stressed you are the worse u will feel.

You're here now..with us..you're not alone 🌈😽😽xx

meggiemog profile image
meggiemog in reply to Krazykat26

Thanks Krazykat. Not sure if it is lupus or connective tissue disease- or even spinal stenosis. I do appreciate all that has been done in the circumstances and to be honest the doctor I saw apologised that I could not get any help when I was at my worst.

Krazykat26 profile image
Krazykat26 in reply to meggiemog

The mind works overtime when you're suffering..the truth is u won't know until u get the results..then u and your rheumy can make some kind of plan. Some things will work n other things may not work..it's all trial n error n we suffer the consequences unfortunately. It's not a race..it's more of a very long slow slog so that's why I'm saying it's important that u offload feelings n connect with peeps who have some understanding of the sheer frustration of it all 🌈😽😽xx

Krazykat26 profile image
Krazykat26 in reply to meggiemog

This is the best site to find out about all things autoimmune. I've learnt more about my conditions here n I've made some very good friends. We're supportive n we like a laugh too..were all living with this 💩 24/7 unlike the docs!! 😹🌈😽😽Xx

meggiemog profile image
meggiemog in reply to Krazykat26

Yes laughter is the best medicine known to man. I try to get a dose every day xx

Yes KK is bang in with that, stress is an evil to be avoided. One day of stress equals one week of increased pain for me at least. Note I do not have lupus though. Relax, breathe and rest.

Thanks stillsdisease - I am well aware of the evils of stress. I have that one covered! Even with relaxation and fun activities you do get a little frustrated by protocols and timescales. I think to have a place like this where you can message people in the same boat is extremely helpful.

Although I have a different Illness there are similar symptoms and I find this site very reassuring 😀

Yes which I guess is why I am here - I can identify with a lot of symptoms that are attributed to lupus - but I don't know if that's what is going on. I don't fit the criteria exactly -But I can see you are a really helpful bunch of people.

Hi MM, any progress with your diagnosis yet or are the team:-A. On holiday

B. Off sick

C. Looking at the wrong notes

D. Working at a different site

Or all of the above as seems to be the case with my GP!

😏

I am thinking I should know something within 2 weeks - so if I have no joy by 20th I will ring secretary again. If they still have no answers I will see if my GP can shed any light - as they should have access to the MRI scan notes. You did make me smile though - I had a friend who was once waiting for results to tests and she was told that her consultant was on long term sickness!!!

I'm in a similar boat, similar set of symptoms - awaiting CT with contrast before possible second rheumy appt. Interestingly neck, head and limbs are being missed off - so won't be able to see lymph node and joint swelling there, or ascertain reason for my headaches. Rheumy has said agreeing to take medication is a condition of having any follow up appointment.

So far only my positive 1:320 ANA is seen as a positive diagnostic feature.

Had sweating, lymph node and joint pains the last three summers. re Neuro: Had numbness for years, bladder and bowel now affected. SICCA affecting eyes, nose, mouth, gut started when I had Covid March 2020. Also kidney symptoms - haematuria and leukocytes started following covid.

Headaches worsened this year. Believe I have serositis - particularly peritoneum. Heart and Lung symptoms too, to get to the bottom of - but so much is intermittent and unless I end up 'ill in hospital' I'm not sure it will get picked up. As I'm a carer, I can't afford for this to happen.

It is a long wait ...and I feel I'm working really hard as neither GP or rheumatology have helped me yet with symptoms.

Hi StriatedCaracara I am still waiting to hear what the outcome of my MRI is - my blood tests have not been useful in auto immune tests - excepting a couple of borderline under active thyroid readings, and my kidney function dropped quite drastically last year for quite a few months. No treatment given for either. I have just had loads of random things happen, from skin rashes to joint pains, random bruises, dizziness, deafness, migraines, digestive issues and weight loss, constantly cold, tired and have the memory of a backward gnat! I work too - but I have an admin job , so not physically challenging. I usually write reminders all over to help my poor brain :-)

Here's hoping we both get some answers that make sense!

Specific auto antibody tests following my ANA 1:320 speckled were all negative, though I think a few were close. C3 and C4 were normal. CRP and ESR were normal. Like you GFR has fluctuated.

I feel really rubbish - like continual flu, so tired, joints and muscles ached for months. Glands up so much in neck that neck now feels numb.

I have memory issues that come and go. I think Rheumatology only look for a few things and they have to be majorly displayed at the time. None of my photos of rashes and bruises were of diagnostic use either. I guess cause could have been multiple things.

Last week my optician found something wrong with my vision field in one eye, patch on the retina - centre of vision not peripheral. He thinks it may be linked to auto-immune disease.

Seeing dentist on Monday about my mouth - nobody has looked at it the last couple of years, I guess ruled out my covid.

Nobody really seems to take much responsibility to get to the bottom of things, unless it is easy to diagnose.

I left my admin job to care for my mum. Really I need a bit of help now too...I feel whatever I have is finishing me..but determined to find answers as I feel I'm worth it, even though those who are supposed to help don't seem to exist...It seems a big con.

I totally understand where you are right now. I am pleased that at least they are going to do a CT scan with contrast for you, as it does show they need to see what's going on inside. They must have an idea what they are looking for if it is a specific area. As for leaving work to look after your Mum, that's quite a challenging situation to be in when you are well! I was lucky that my Dad was still physically well/ fit enough whilst my Mum was alive to look after her. I was there every day to support him, but we lost her 6 years ago. I don't regret a minute of the time I was there, and my Dad is still around - he's more active than I am and his hearing is better than mine too despite his age! In fact a lot of my issues seem sadly not age appropriate to me! I do believe that everything is linked though, it's just finding someone clever enough to put all the jigsaw pieces together.

Hi Meggiemog, you’re in good company here! It definitely sounds like something autoimmune is happening, and I relate to the utter frustration of not knowing your results. Can you get the report direct from the MRI place? I don’t know what it’s like where you are, but in Australia, we can collect our own films and written reports from radiology. Of course, that doesn’t help much when the reports are a bunch of long words no human was meant to understand, so sometimes you still need to await a specialist for interpretation! I recently underwent an agonising wait for neurological test results, so…I understand. Hope you get some relief from the waiting, and from the killer back pain, soon. There’s good support here, we feel your pain!

Hi Musicalfurbaby,My MRI was ordered through rheumatology dept. at the local hospital - at a push I could see if the results have been sent to my GP's but otherwise I don't think anything much more can be done. I spoke to the rheumatology secretary a couple of days after the MDT meeting had taken place, she said my case had been discussed and the MSK radiologist was due to dictate a letter, of which she would send me a copy - but he only works 1 day a week!!!! No other information given. I think the GP does get a copy of the MRI/ notes so I will probably give it another week before I call rheumatology again if I hear nothing. Failing that I will pester the GP to see if they can enlighten me!

Yes, you can recruit your GP to assist with things like this. It’s so hard when our health professionals only work one day a week, at least in the local area. I’ve had a few specialists like that, they work locally one day a week, and work on Mars the rest of the time. I’d go, but the transport costs are astronomical... 😂

I think this one might do private practice the rest of the time or perhaps mountain climbing - or may be he does a drag act at the weekend and goes by the name of Fluffy Slippers, Mars is a bit too far :-D I think the only sure fire way to get quick results is to go private - but that is costly. I have done that before - but not since this pandemic! Then you do get results very quickly - you always see the consultant - and you always get a proper follow up, but it's money I don't have to throw at them right now! The wait is painful literally!

Yes it is...Fluffy Slippers! Hehe 😂

Got my letter today - I will leave you guys in peace as no mention of other symptoms - MRI showing disc bulges and large boney growths. This is the problem with not actually seeing the people after tests - they discount anything else you say.

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