Can anyone help.....please...: Hi I am new to all this... - NRAS

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Can anyone help.....please...

14 Replies

Hi I am new to all this,but can I ask if anyone else gets pressure in their head,blurred vision and lightheadedness? My pain is mainly in my neck so don't know if it's all connected.... thanks

14 Replies

Yes, but not as a result of my arthritis. I have symptoms like these as a result of a congenital neurological problem. Arthritis can have an effect on the eyes and vision, and some types can lead to dizziness/vertigo. Have you had any tests or scans at this point?

in reply to

Hello,thank you for for your reply,no its taken ages just to get a blood test at doctors which came back positive for ANA been referred to hospital but anywhere local have no available appointments so its the waiting game....I am not used to feeling unwell and worry that I am becoming a hypochondriac.....

in reply to

It’s always difficult when there’s a chance of having something chronic wrong, and quite normal to worry and be a bit hyperaware, I think, so don’t give yourself a hard time. Uncertainty is one of the most difficult things for me personally to cope with, and the diagnostic process can be really quite uncertain for the duration.

A positive ANA could mean a few things ranging from nothing at all, through to viral and infection activity, arthritis, lupus, or even temporal arteritis: it’s a test for levels of antibodies, so a positive test is usually indicative of some kind of autoimmune process occurring in the body, but some people have a low level positive ANA without having any physical symptoms of anything, and a positive result is only one small part of the overall picture. Some people have quite complex autoimmune diseases without ever having a positive ANA.

Have they given you any indication of wait times? Have they offered to run any other blood tests? Whilst not specialists, GPs can usually request other autoimmune and inflammatory bloods, and that may give them leverage to get you seen more urgently if anything else comes back wonky. They can also request ultrasound scans which can be really useful with joint concerns: I have a type of arthritis that doesn’t show up at all in my blood work and only got diagnosed because my GP decided to get a scan of a badly effected finger joint. I’d been back and forth for a decade with swollen, painful joints, and we now know I probably had it from my mid teens, but only got diagnosed this year thanks to that scan. With anything potentially autoimmune, you do want to be seen sooner rather than later, because if there is anything requiring input, the sooner you start treatment the better.

in reply to

Oh bless you,I feel quite a fraud.. mine started in April,thinking it was an ear infection,twice,then TMD and with not being able to see doctor or dentist,looked things up online... but my neck has gradually got worse as well as other joints and after many calls to doctors finally got blood test I am doing neck exercises and doing everything possible to help myself as I don't want to depend on pain killers but it has impacted on work a lot now,and I do early or late shifts which doesn't help. You sound like you have been through a rough time

Boxerlady profile image
Boxerlady

It can be very scary but try to stay positive and also try not to Google too much 😉

Great advice from Charlie and I'd second the suggestion that you ask the GP for as many tests as possible as it might speed things up once you get to see someone at the hospital even if it doesn't mean that you get seen any sooner. I had extra blood tests and some X-rays and on the back of those my GP was able to chase up the hospital and get me an earlier appointment.

in reply toBoxerlady

Thank you Boxerlady,I will take your advice,like everyone suffering during this crazy time it does get scary and things are taking so long to get moving

Boxerlady profile image
Boxerlady in reply to

Feeling ill and not knowing why and the current situation are each horrible enough but together they add up to a double whammy with nobs on! 😱😩😂 You'll find lots of support and great advice here so keep posting 😉

in reply toBoxerlady

😂...and being a lady of a certain age.....!!

Thank you for all your support on my first day on here,it has made me feel welcome 😊

Boxerlady profile image
Boxerlady in reply to

Now that's yet another can of worms.... Where are you meno-wise? Pesky hormones can have a lot to answer for! 🙄😏

in reply toBoxerlady

About 18 months in.....but this year I seem to have hit a brick wall health wise.....always been so healthy,I am finding it difficult to deal with feeling unwell....being single doesn't help (or maybe sometimes it does....) tried HRT at beginning of the year,it didn't suit,then covid struck and everything went out the window....I do think it has been the start of my problems

I work in retail,not a good environment to have hot flush whilst trying to look professional in front of customers 😰😯

How about you, how are you doing?

Boxerlady profile image
Boxerlady in reply to

I'm at the other end! I started a very rough peri-menopause in my mid-40s (although no hot flushes) and went on HRT which was a life-saver for me. RA started December 2018 and diagnosed and treatment started May last year. Things are improving considerably after various medication tweaks and after turning 60 in March (eek!) I bit the bullet and came off HRT nearly 2 months ago. Managing OK so far - a few daytime flushes and about half a dozen night sweats but manageable 🤞

RosieA profile image
RosieA

Hello. I think Charlie G and Boxerlady have hit the nail on the head. Many of us have felt like a hypochondriac at some point as symptoms can be quite vague, transient or different ones can develop over time at the start of an automimmune disease, so your in good company here.

Ask your GP to explain your test result - many labs automatically run the next series of antibody tests when they get a positive ANA. If this didn't happen ask your GP if it is possible to run them- as suggested by the others.

Phone the service that where you have an appointment pending and get the wait time! Nudge them if you need to. Best not to be too passive if you are sufferring but to be a 'delightful' pain in the neck (sorry no pun intended).

My autoimmune disease is, even after a year since first seeing a Rhuematologist, emerging and changing. I think my initial diagnosis has gone from an inflammatory arthritis, to undifferentiated connective tissue disease, to .... ? Am awaiting another letter from another consultant to add to the picture. So for some of us there are no quick answers but and it's a big but getting early treatment is part of the good practice guide. Look up NICE.

P.S.I get blurred vision now when I am fatiqued does yours?

Hope this all helps a little. Do let us know how you get on if you feel able. x

cass24 profile image
cass24

Hi and welcome to the club no one wants to join. You've already got lots of good advice but just wanted to add, if the blurred vision is a new symptom then it's definitely worth contacting your GP to let them know... Of course, it may be nothing to be overly concerned about but, in my experience, it's one of those symptoms the medics tend to take quite seriously and, at the very least, might help speed investigations along a bit ;-)

Wishing you all the best of luck x

Pasjc profile image
Pasjc

Hi i have very similar symptoms to you and I have neck problems. I should have had surgery over 2 years ago but the surgeon won't operate because I'm on prednisolone only 5mg. I won't bore you with the details and I hope you find an answer soon and in these covid times I hope you get a solution. Xxx

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