multiple diagnosis

[Ashley1014]

hi! Thought I’d introduce myself. I’m Ashley 34 female. I have Ankylosing spondylitis, rheumatoid arthritis, fibromyalgia, and psoriasis. I’m on enbrel and methotrexate and have flexeril as needed. My pain is mostly well controlled other than my left leg which has permanent damage due to my si joint being dislocated for a few weeks years ago before I was diagnosed. No one believed my pain back then and wouldn’t do even a simple X-ray. Unfortunately I am experiencing some medical gaslighting again and I’d like your opinions.

I currently have swollen lymph nodes on the right side of my neck, weakness and fatigue that is more severe than from my chronic illnesses, night sweats, loss of appetite and I’m losing weight and I struggle to lose weight. Infection has been ruled out. Ultrasound of the neck wasn’t clear. So I have made an appointment with an ENT and I see me rheumatologist this week but what would do yall think?

[Spanelmad]

Your doing the right thing keep pushing !!

[Ashley1014 in reply to Spanelmad]

Thank you! I just want answers.

[Deeb1764 in reply to Ashley1014]

I have RA, fibro, aortic stenosis, COPD , diabetes2 and OA and a few other issues. It takes time to get to answers and some things ie fatigue, sleep issues and weight sometimes just comes with all of the above. If you feel once ENT done that something is not right either talk to your GP if a good one or back to RA team to try and pick apart what illness could be causing certain things.

My GP smiles and says “ ahhh the complicated one” when I go in and I have to accept there is no quick fix or reply .

For me if not still feeling right, I do the odd private consultant to get advice or a test. At the moment my FENO test keeps being cancelled and I have had enough, so seeing what the cost for this 10mins process is and try to see if worth doing so I can try and sort some of the COPD issues.

Good luck and if f frustrated call NRAS as they have a wealth of knowledge and can signpost you in a direction you might not have thought of.

5years in still have high fatigue not been particularly stable and just keep getting layers of conditions added.

[Ashley1014 in reply to Deeb1764]

I am so sorry. I know the struggle well. It’s ridiculous how we must fight so hard sometimes just for decent care

[medway-lady]

A blood test for more serious stuff might be in order if it’s not already been done. Raised lymph nodes could be totally unrelated to RA and might be trivial but annoying or something else completely. I’d urge you to see your GP and discuss with him/her.

[Ashley1014 in reply to medway-lady]

My GP is the one who ordered the ultrasound and ruled out infection. Unfortunately when I pushed for more testing because I still didn’t feel right she offered to test me for RA. Which is clearly noted in my chart that I have and my rheumatologist sends her frequent updates. So I believe I will be finding a new gp/pcp.

[medway-lady in reply to Ashley1014]

That sounds bad, I was thinking if you’ve got inflammation in the lymph nodes that they'd check for all sorts of stuff especially with other symptoms. Is there another GP in the practice?

[Ashley1014 in reply to medway-lady]

There is but she’s booked out for quite some time. I am seeing an ent in two weeks and my own rheumatologist this week and am hopeful one of them will do something. I can barely leave the house I’m so weak and exhausted

[Minster30]

Morning Ashley, I'd definitely ask for a Full blood count to be done but in particular white blood count and certainly seek out another GP 💜

[Ashley1014 in reply to Minster30]

My wbc was initially elevated. I am unsure if it is still elevated after taking a round of antibiotics

[Chester1975]

Sorry to hear this. Have they tested your thiroid? Also MTX can interfere with the bowel, maybe a colonoscopy to double check? It’s worth asking the Doctor. Good luck.

[Ashley1014 in reply to Chester1975]

Yes my thyroid is all normal and a colonoscopy has shown I have IBS-c treated with diet

[Lizard28]

hi Ashley, if they weren’t sure when you had the ultrasound I’m sure they would have done a biopsy if they were worried, I had NHL and your symptoms are similar, now I’m not saying that’s what it is, but if the swollen lymph nodes can move its probably just an active lymph node doing its job. My symptoms were drenching night sweats, had to change even the bed sheets, lethargic and lost lots a lot of weight. My GP examined me and I think she could tell it wasn’t an active lymph node, , it was hard and didn’t move so sent me to ENT, they put a camera down to check then sent me for an ultrasound with biopsy, then I had a CT scan before I was diagnosed. They can usually see on the ultrasound if anything sinister going on. But if you are not happy, tell them that, they may do other tests. Blood tests also show abnormalities. Fingers crossed they get to the bottom of it xx

[Ashley1014 in reply to Lizard28]

The reason I’m concerned is the lymph nodes do not move. And I saw my pcp virtually due to snow and she didn’t come into the office so she didn’t feel them. She treated me simply based on sight and test results which isn’t horrible but she was not listening to my symptoms.

[Lizard28 in reply to Ashley1014]

Honestly Ashley, that’s not on. She should have examined you. After my Gp did that she told me she was referring me for an urgent ENT appointment and told me to make sure I go even if it did go down a bit. I was shocked to find I had NHL. I had been to my GP because I was losing weight and I wasn’t on a diet. I wasn’t overweight either but when I went down to 7 stone I started to get worried. It was only when the lump got bigger on my neck did she take notice of what I was telling her. My Haematologist always checks my neck all round it, then under my arm and groin area. I had stage 4 as it was at side of my lungs, kidneys, under my arm and neck. They took another biopsy under my arm and had a bone marrow biopsy to confirm staging etc. keep pushing them, it’s not fair the way the are treating you.

[jackNruby2]

Hi Ashley pleased to meet you, I have R A + other ailments, I also have an underactive thyroid. My GP refused to send me for tests when I first felt the symptoms of thyroid problems he insisted I was depressed, then another GP who knew my family well told him to tests for them prescribe thyroxin, I had the same battle battle, with the same Dr, when I developed Rhumatoid Arthritis he insisted I only had mild Osteoarthritis and refused point blank to refer me to rhumatology, I would not give in and eventually met my wonderful rhumatolgy team I was diagosed immediately with RA and they have looked after me ever scince.

The moral of this long winded tale is DON'T give up.

Have you had a thyroid function test? it could be worthwhile

[Ashley1014 in reply to jackNruby2]

Thank you for sharing! I have had a thyroid function test. It was luckily normal. I do not have my mind set on lymphoma as my husband says. But I was a nurse before my chronic illnesses took me out and I know to pay attention to the symptoms and listen to the patient because they know their bodies best. And I feel as if I’m being completely ignored by my pcp and that is why I’ve scheduled with the ent.

[jackNruby2 in reply to Ashley1014]

Good luck Ashley1014 I agree that we know our bodies best take care xx

[MistyDay]

My RA was diagnosed together with fibromyalgia when I was 29. I too, had swollen tender hard lymph nodes under my arms, in my neck and chest . My RA was very active when young, like yours.Initially I had steroid injections, then eventually a CT scan, then surgery to remove a few in my chest. They were benign but solid and full of cells used in fighting RA. I am now in my late 70s. RA is with you for life. You have to live with it, and make the most of your life despite pain. I have. I had a rewarding full time career for 40 years and continue to have a happy fulfilling life. Fortunately, there are better treatments and meds today, which were not available when I was your age, to control pain and slow down the RA. Stress is a killer. Try to relax, keep slim, keep active and eat healthy.

[Ashley1014]

I wanted to give a bit of an update. I ended up in hospital yesterday due to severe weakness and fatigue. I could barely walk. Turned out my sodium levels were dangerously low! They fixed me right up and gave me directions on how to take care at home and I’m following up for labs to check my levels again soon. They also made it clear to keep my ENT appointment because they couldn’t find any reason for my low sodium and they were a bit troubled by my swollen lymph node and other symptoms as well.

[IlovePorridge]

You're certainly having a difficult time, Ashley. Thanks for the update. I hope you will soon have a correct diagnosis and treatment. Best wishes