Awaiting bloods , xray results / diagnosis: Hi everyone... - NRAS

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Awaiting bloods , xray results / diagnosis

Joy32joy32 profile image
14 Replies

Hi everyone

Im new to this site , its my first post although I have been avidly reading all your posts

I am waiting for my diagnosis , I see my Rheumatlogist next week . This is really embarrassing but i wondered if its connected to all my other problems.

I so far have :

Posterior blepharitis

Excema in my ears

Very painful joints

Numbness in the ball of my foot

Pins and needles, stabbing pains in my toes

Night time burning pains in my legs , I could go on

I am not a hypochondriac! I still struggle on and have worked from a very young age , I am now 63

I have noticed that I find it difficult to hold myself when I need to go to the loo ( not urine ) and also have a foul smelling flatulence problem

It would be laughable if it wasn't so embarrassing

Im wondering if your bowel can become Inflamed too

Any help please

Thanks so much

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Joy32joy32 profile image
Joy32joy32
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14 Replies

Hi Joy and welcome to this friendly, supportive group. I hope you get a diagnosis and start to get some relief when you see your rheumy next week.

Mmrr profile image
Mmrr

Welcome!

I can identify with most of your symptoms. You will probably find most people have at least some of them. You are not alone!

And yes, the flatulence too! Although I suspect mine is related to methotrexate and mucositis.

Welcome, sounds like you’re suffering quite a bit :( Hopefully your Rheumy appt next week will start you on the journey to feeling better, cheers Deb

Joy32joy32 profile image
Joy32joy32

Many thanks for all your comments . Yesterday should have been my RD appointment and it was cancelled on Monday evening . I'm so upset but have rung them and they have given me an appointment for 24th April, I really cant wait that long as my dentist is waiting to do major works on my problematic teeth and cant begin until I have my diagnosis. I have told them this and they are going to see what they can do .

Has anyone ever been down the route of paying for a consultation with a private RD just to get your diagnosis. It would be very helpful , thank you

I wish everyone a pain free day full of hope

I usually ask to be put on a cancellations list for a short notice appointment if I need to be seen earlier. Might be worth asking if your hospital does this? I hope you get a sooner appointment.

Joy32joy32 profile image
Joy32joy32 in reply to

Hi Kitty , thanks for your suggestion, I called the hospital and have managed to get an appointment for 2nd April so I’m really pleased with that.

At my initial appointment when I just had bloods and xrays taken , I was given Celebrex and omeprezole , I have only just started taking it , does anyone have any experience of it please .

Also I have noticed that since I had to come off of her last year, my symptoms are much worse . Any tips there please, I have been told that I go back on it but I’m waiting for my diagnosis before I decide .

I’m so glad I found this site as I find it so informative and supportive

Joy32joy32 profile image
Joy32joy32 in reply toJoy32joy32

Her should be HRT

in reply toJoy32joy32

Good news you are being seen earlier 😊

Joy32joy32 profile image
Joy32joy32

Hi everyone

I hope today is being kind to you all

Im a bit upset at the moment, I have had my follow up appointment that I had to really struggle to get and am still none the wiser . According to the RD my bloods are fine !y X-rays are showing some signs of arthritis. He has requested scans of my feet and a dexa scan . Both times I have seen the rheumatologists neither of them have examined me at all . I have seen a podiatrist privately who seems to think that I have Morton's neuroma in both of My feet , any one had anything similar please. Im now back waiting again for scans and follow up appointment. So frustrating! Has anyone been down the private route

Many thanks

helixhelix profile image
helixhelix

Morton's neuromas are painful so sympathy!

Scans should show up inflammation, so hopefully will give more clarity. I'm sorry that it is so frustrating, but very sadly it can be a long slow journey to get a clear diagnosis. If your blood tests are clear, then I'm not sure what else a private consultation could tell you? You say you have painful joints, but if they are not hot and swollen then that's not an obvious sign either.

If the money isn't an issue for you then a private consultation can be great to get some feedback, but it may not take you closer to an answer than waiting for the results of the scans would.

Joy32joy32 profile image
Joy32joy32 in reply tohelixhelix

Good morning Helix

Thank you for your reply .

Money is an issue to me to a degree but as the scans and appointments take so long in Kent where i live i just thought if i paid for a consultation it might give me a clearer picture of what is going on with me . I know thst the doctors backs are up agsinst the wall with too many patients and not enough doctors! I feel that i am not always listened to re my symptoms . My main sympton with all my joints was apart from the pain was hotness and burning . I did expext to be examined at my appointments , if they had looked at my feet , toes etc they would have seen how bad they are . I had a bad break to my left leg resulting in surgery with plates and pins , the year before i had a type two tear in my right hamstring and last year broke the 5th metatarsal bone in my left foot . Its been a tough couple of years ! I knew that a result of all the trauma I would eventually get arthritis but didn't expect it to come on so soon.

Please excuse any spelling mistakes as my fi gets don't work too well first thing in the morning plus they feel like sausages 😊

Many thanks everyone

Just feeling a bit sorry for myself today

Joy32joy32 profile image
Joy32joy32 in reply toJoy32joy32

Meant to add thought a private Consultation night at least get me examined

helixhelix profile image
helixhelix in reply toJoy32joy32

Yes, there is that. You tend to get more time as well and it can be reassuring.

However, these auto immune diseases don't depend on a single factor for diagnosis. So even if a doctor had looked at your feet, with nothing showing in your blood tests they would still want to see x-ray or ultrasound evidence before making a firm diagnosis. But getting what is essentially a second opinion by going private could well be worth it. Try to find a consultant who also works in the NHS so you can swap seamlessly back if you get on with him/her.

Sausage fingers does sound suspiciously like inflammatory arthritis, so also the sooner this is decided the better. (But this type of arthritis isn't usually the result of trauma, it just happens!)

Joy32joy32 profile image
Joy32joy32

Hi all x

Hope today is kind to you x

I had a scan yesterday and the radiologist told me I do have a Morton’s neuroma in my right foot and it is extremely inflamed, my left foot is just showing inflammation.

Anyone else had a Morton’s Neuroma ?

They are going to do a scan guided injection on the neuroma .

I also had a dexa scan and am having a detailed scan of my feet on the 13th May with a follow up appointment on the 15th

With my rheumy doctor . So things are moving at last and im hoping for a diagnosis at that appointment 🙏

Any information on the prognosis of Mortons neuromas would be great please

Many thanks

Joyce

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