Hi wonder if you can help me RA ??

[Buckley123]

Hi guys

My name is jade and I’m 29 I have three small children

I’ve been undergoing apt of tests lately

After my mum passed of ms last year.

All started with a funny eye believe it or not.

Ended up having a brain scan which found lots of scarring and active lesions

I was then diagnosed with ms

Later I had a lumber puncture and other tests and all negative also a ms specialist told me my brain issues was the wrong area for ms so the diagnosis was taken away🙏

I’ve seen many neurologist and rheumatologist most of my tests are negative

I have raised ace levels

And raised tpo antibodies but my thyroid levels are normal.

My symptoms vary

Joint pain /slightly warm joints when in pain this is new

Muscle pain/ weakness/twitching/jolting

I have hip deformities and bone marrow changes

Brain issues

Temperature swings

Dry eyes and mouth

Slow vision floaters ect

Headaches

Flushing of the cheeks

Tiredness

Pernicious anaemia b12 injections

Lymph node swelling of the neck

Swallowing issues lump in throat

Pcos

I see a good rheumatologist who thinks I have uctd my neurologist agrees but I see another doctor who disagrees completely and believes I’m ‘fine’

I do not feel fine

My question is my legs are so painful it flares up and down I can’t sleep much atm worse at night even worse when it carries on in the morning.

My wrists hands and fingers all have started to hurt along with some pains occasionally in my shoulder.

Seems stress can trigger it hospital appointments driving the cold or anything really

My hips are knackered but I’ve never had a reason for why the head of the hip joint has changed shape and I have bone marrow edema on my mri which was 6 years ago never been looked at since.

Now same pain in wrists

Could this be RA!?

I’m on hydro but it’s not really helping but my neurologist thinks it can take a year to help I’ve done 6 months but it’s getting worse.

I haven’t really pushed it because I’ve been more panicked about my brain 🧠

But that’s stable for now 😊

Can anyone help me please

Thanks

Jade xxx

My

[KittyJ]

It’s not much help to you I know but that’s a lot of symptoms you have going on there. You say you “haven’t really pushed it” but if it were me I would push it now. Sometimes you have to keep on at doctor’s until you get some answers. I hope you get some answers soon 🤗

[Buckley123 in reply to KittyJ]

Thanks kitty I have as in neurological brain area but my legs I haven’t really pushed all too much xxx

[Hidden]

I definitely agree, because while you are waiting and not being treated your joints are being damaged. Visit this website: nras.org.uk/ and you will see a helpline where Mon - Friday you can ring for advice. In the meantime, make yourself an appointment with your GP and try to get a referral to a rheumatologist. And read as much of that website that you can cope with.

[Buckley123 in reply to Hidden]

Thanks 🙏

I have a rheumatologist dr professor Cruz

He’s very good thinks I have uctd just wondering really with my legs getting worse could I have some Ra thrown in

I’m on hydrox 200mg a day only xx

[Mollieharry]

Hi,I see with what you have written you have pernicious anemia.my understanding is that if you have one autoimmune disease You can go on to develop another.so it is possible,You really need to push your rhuemotologist for answers.also have you looked at healthunlocked for pa,Vitb12 deficiency,a lot of pa symptoms can show as nuerogical problems,twitching,eye problems etc and there have been people who have symptoms similar to ms.a lot of interesting reading from people who have a lot of knowledge on it.not that I’m saying any of your symptoms are caused by this but worth looking in too.

[Buckley123 in reply to Mollieharry]

Thanks yes I have I’m hopeful this is what has caused it

But my joint pain and joint corrosion not so much x this is why I’m under uctd I think it means no one knows😂

Xx

[Mollieharry]

Yes your right.obviously the hydroxy is not working as it should,if you’ve gave it 6 months I think you’ve gave it a good try.I would be asking them to try other Dmards before You suffer any more damage.

[Buckley123 in reply to Mollieharry]

Thank you I will try to contact

My rheumatologist next week xx

[Funswim]

My RD started with awful leg pain with hip/lower back pain. I had restless legs jolting and cramping through the night and the pain and sudden movement was driving me mad and it ached to walk in the day, especially after sitting. I had an MRI and an excellent surgeon did a spinal fusion in the base of the spine and metal rods. It was all caused by degenerative discs in the spine. Not saying this is the same as your problem at all but spinal problems can cause a lot of pain - might be worth asking if another MRI would show anything has changed. I also have multiple joint pain and had several different diagnosis' over the years. I now have confirmed RD ,OA and Degenerative Disc Disease ,but still have not found medication to ease pain.

It is incredibly frustrating to have so many problems and I have on and off facial /neck swelling too which no one seems to find a reason for. We are all very different and no one person has the same symptoms or outcome. Hang in there and persist with pushing for treatment as it seems the rheumatology teams are extremely overstretched and you can easily be overlooked. I am not a medical person but a fellow sufferer and I do find making a nuisance of yourself sometimes does get results. I never used to be a pushy person but have realised now that it is necessary in order to get some real help. Good luck!