Help MRI referral and scared 😢: Not sure who to... - LUPUS UK


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Help MRI referral and scared 😢


Not sure who to ask or even if this is the right group but I know how kind you all are so need your advice! Sorry for the length of this but if I explain it might help I hope.

I'm probably panicking as I know my body is not well and after 19 months I'm getting scared. I have confirmed Hashimotos and connective tissue disease but treating for SLE with hydroxy. On quite a few meds but beginning to feel better and the gabapentin has been a life saver for my tremors these last 2-3 months. Seeing my Rheumy again end of August. But they've been thorough and my liver heart kidneys are all good but my lung pulmonary has shown problems but nurse who did my recent one said it's not bad at 77% and he's seen a lot worse so was reassured.

However my thyroid keep swelling up when I exercise or get stressed or sick so my Endo requested a barium swallow which I had Thursday. He said it wasn't a hiatus Hernia and thyroid looked fine just typical when you feel sick nothing shows up.

Then today I've received a letter for a referral for a pelvis and thigh MRI. I've panicked got really upset and just want to cry! I really struggle getting up stairs and get jelly legs and out of breath walking too far and can't walk fast. I do have some hip pain but thought it was just sciatica.

I'm just confused what could show up from a barium swallow which I think covers my stomach to request a MRI for my pelvis and thighs but am grateful it's being investigated. But I'm also thinking something has shown up.

It's been such a difficult 18 months I'm on my own with my daughter and after nearly losing her to an illegal driver hitting her crossing the road last year and my ongoing health problems and hospital appts more drugs and tests I'm just panicking and scared as I just can't take anymore 😢

15 Replies

hi hun, please try not to worry, I know that is difficult but sometimes these scans can be as a precaution. You do have a lot to deal with and I know how the constant appointments can be overwhelming. Could you try seeing your GP while you wait perhaps? I hope you feel more calm soon, hugs T

MissFG in reply to thyro1

Thank you am in tomorrow morning at 8am. Am calmer just really worried can't even see or call anyone as it's the weekend. So going to get myself a prosecco and think positive! Being sick really sucks x

thyro1 in reply to MissFG

that's sounds like a fab idea! All the best for tomorrow, hugs T

MissFG in reply to thyro1

Thank you I've everything crossed x

All the best from me, too. You are being taken care if very thoroughly in terms of investigations x

MissFG in reply to Lupiknits

Thank you! Yes my consultants have been very good but also I've had to push and push if we don't we won't get anywhere. Just glad I have now x

Hi, I am a 22 year veteran of mixed connective tissue disease. The emotional toll this illness takes is vastly underestimated. Stop worrying about all tests and investigations I know it's difficult but there will be hundreds so not worth the worry. Stress is our worst enemy, try hard to keep calm. I know it's hard and each day is different.Gps can be good or crap I find, most don't have a clue about our problems, this can be frustrating. But insist you want to know what the MRI is for, Rheumy folk probably just following up on a possibility, better being safe, our illness will respond but better catching symptoms early to get rid!!Keep strong, life tends to get n the way, but remember all days won't be as bad, fight on best wishes.

MissFG in reply to neicer

Thank you! I managed the MRI after a little initial wobble just got to wait for results. Can I ask with MS & SLE I understand there's lesions would these show up on a pelvis thigh MRI? I'm just hoping it might help get a clearer diagnosis

I am not sure I understand about the hiatal hernia, but if you are having hip pain/sciatica and have other autoimmune diseases, have you been checked for ankylosing spondylitis? I was misdiagnosed for 28 years and the first 15 or 20 years my main symptom was terrible sciatica. Ankylosing Spondylitis attacks your SI joints and the inflammation and such irritates the sciatic nerve causing that pain. Sometimes they can tell on an MRI of your pelvis also there is a blood test they do to see if you have a gene called HLA-B27. Only 5% of the people that have that Gene will get Ankylosing Spondylitis, but most people who have Ankylosing Spondylitis have that Gene. That Gene is associated with psoriasis, psoriatic arthritis, ankylosing spondylitis, irritable bowel syndrome, and reactive arthritis. It's a different gene then say, rheumatoid arthritis. One thing that makes it hard to diagnose is with Ankylosing Spondylitis you do not have a positive ra Factor or a positive ana. Most the time you'll just have a high C-reactive protein and sed rate. It's usually diagnosed with the associated Gene and an MRI to show inflammation or if your Advance it will show Fusion in your spine, sometimes called bamboo spine. I may be off in left field here because you may not be having the AS symptoms. Another thing to watch out for is if you've had uveitis. It's an inflammation in your eyes that is associated with ankylosing spondylitis. I think I've rambled on enough LOL I hope I said something that may help you a little bit.

MissFG in reply to Lexilourue

Thanks would it make a difference if I have had a positive ANA?

I meant to ask if your connective tissue disorder is Elders danlos syndrome where your joints are hypermobile or if it could be something like Ankylosing Spondylitis where things are fusing up and your connective tissues are ossifying or growing new bone growth. That's what Ankylosing Spondylitis is the soft tissue, mostly in your spine, new bone growth is a by product of constant inflammation and healing. Some info will say your soft tissue is ossified or calcifying.

MissFG in reply to Lexilourue

At the moment their just saying differentiated connective tissue SLE has been discussed but they don't seem to want to give me a conclusive diagnosis but are treating me but I understand hydroxy and gabapentin are standard for all. The pain feels like bad period pain and sciatica in my left groin. Could inflammation cause this pain? And my bloods don't show high inflammation but within range yet I do have swollen joint pain with the hydroxy had helped a lot with but only been on it about 3 months now

Ahh, the lesion word, in the scary group of words!!! It literally means any skin or organ damage. A spot is a lesion. I had over, heart, kidney lesions. Your body's greatest property is it's power to heal. It takes us time, but it will. I don't man to make light, autoimmune disorders are all horrible. Trust in your specialist, they live their job, and are on the ball. The groin pain could well be inflammation. It hurts like hell. No two people are the same and it's common for us to have overlap disease ie more than 1 disease. I have SLE,Systemic sclerosis and Raynauds. Hope you feel better soon.Hdroxy takes a while to work but is a good beniegn treatment.

Hi there,

Try relax and work with your doctors, it is hard right now but it will get easier. I can related with some of your symptoms and had several MRI, CT, EMG, muscle biopsy, lots of blood tests. I was diagnosed as dermatomyositis with skin rash, muscles weakness and lung problem it ILD. I'm now much better but was so frightened about one year ago after the diagnosis.

Hope you will have the proper diagnosis and treatment.

Best wishes!

Hi, don't worry I was sent for a MRI last week, with my conditions he said he needed to rule out any tumour on my pituitary gland, he said it was normal practice, but the scan itself was fine just lie bk and listen to the music 😁 x

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