Bit scared: I'm feeling a bit scared because I've... - LUPUS UK

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Bit scared

Maya23 profile image
12 Replies

I'm feeling a bit scared because I've had a letter from neurology that says the last MRI I had has flagged up a couple of things. I was having an MRI to see what might account for my nerve pain and various CNS type symptoms that might be due to having lupus. The neurologist wanted to first rule out vasculitis.

The MRI showed that I have something that looks like an ' (small) incidental meningioma' which I have learned is a type of benign tumour. It also shows that I have 'foraminal stenosis' on C5. C6 and C7 on my neck joints, which I've found out that it means I have narrowing of the nerve pathways which can cause nerve pain.

I'm being sent for another MRI with contrast dye in 2 weeks time. I'm rather nervous about this. Has anyone else had this? Have you got any tips for me? I'm thinking it would be good to be well hydrated beforehand. As far as I know the dye contains iodine. Has anyone reacted badly to this? I'm having blood tests tomorrow to check my renal function (it's usually fine). Any info/tips/comments/reassurance welcome! Thanks.

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Maya23 profile image
Maya23
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12 Replies
Purpletop profile image
Purpletop

I've had that numerous times - it's fine. They get you out 15 mins before the end of the MRI and inject in the cannula they've inserted from the outset. Then put you back in for 10 mins. If your kidneys are fine, you shouldn't have an issue with this AT ALL.

Interesting about what they found - please let us know what the MRI shows.

Maureenpearl profile image
Maureenpearl

Hi Dryad, I've never had this done but I'm praying all will go well for you with the iodine and praying for a good result.

God bless

Maureen xox 🙏💐xx

suzzy profile image
suzzy

Hi I had MRI to find a answer for all my joint/ muscle pains. They also found a incidental meningioma, and discs in my neck trapping the nerves! hope you next MRI goes well.

Maya23 profile image
Maya23 in reply to suzzy

Hi Suzzy - did they have to monitor your meningioma over time to check it wasn't changing or growing? I'm wondering what to expect. Thanks x

suzzy profile image
suzzy in reply to Maya23

Hi Dryad yes I have an MRI every year for 5years . My last 3have shown that it hasn't grown, :-) but I didn't have any dye put in! I have found them to be fine, and reassuring that they check it . Try not to worry. Xx

Maya23 profile image
Maya23 in reply to suzzy

Thanks - I'll try not to worry! I've just started the drug LDN to treat the lupus and the doctor said that it might even have a positive effect on the meningioma (i.e. shrink it!). I have hope x

ShellyB1 profile image
ShellyB1

I had a CT scan with contrast dye a few months ago when they were checking my urinary system. I was nervous too and explained to the doctor that I react to a lot of meds and felt concerned.

She told me I had done right to express my concerns about being sensitive to meds so she was aware, and that they always have a standby team in case of any problems arising.

Mine had to be injected slowly (kidneys) and apart from feeling slightly odd for a few seconds initially I was fine during the scan.

I did suffer from blurry eyes for about 20 minutes afterwards though, and was glad I had hubby with me to drive!

The doc told me that almost as soon as the dye is injected the kidneys are already getting rid of it - and to drink plenty of water.

Try not to worry, I'm sure you will be fine.

ShellyB

Barnclown profile image
Barnclown

Hello dryad....am so glad to have your update...had been wondering how things were going...seems to me you are v brave....you're showing great courage as you go through this trying, time consuming diagnosis process....which is an ordeal none of us would wish on anyone. I'm so glad you're here

You've got some great replies already & I have little to add...except maybe to say well done & so far so good: you & your Drs are doing a thorough job of diligently figuring out the detailed causes for your symptoms & how these causes interact. When I went through a similar process back in the 1990s, the testing was somewhat less refined & thorough, but the info gained has been really important to increasing my quality of life...and those investigations created baselines which are standing me in good stead as the years pass and cause is being found to re-appraise my case in the course of adjusting my treatment plan

Take care, take heart...👏🏻🌷🍀XO

Maya23 profile image
Maya23

Thanks so much everyone for your supportive and helpful comments. I feel your support and I feel a little more brave now because of it. Thank you!

Fighting profile image
Fighting

I've been told I have a narrowing of the nerve pathways. There were MRIs done when I was hospitalized and again after I got out. I find it difficult to determine where the pains originate. I do find that the less stressed I feel the better the pain is. DE-STRESS any was you can.

A friend of mine has been living with a benign tumor between her brain and the skull for years. It is someplace in the brain area. She has determined that she will seek out a surgeon if and when it causes dysfunction. All I can say, is our bodies are very complicated and many weird things can malfunction. I wish you the best Dryad.

Stynk profile image
Stynk

The contrast is fine. It just takes longer than a normal mri. Keep us posted!!

Maya23 profile image
Maya23

Thanks for all your support. I had the 2nd MRI today with contrast dye and it went fine. I didn't feel weird or anything afterwards (so relieved!!). I was taken to the new MRI machine - so new I was only the 2nd person to have been in it! Now I await the results.

Thanks again x

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