So I finally got the MRI results today. No cancer! No MS! Wahoo! I have some mild to moderate degenerative disc disease, some disc bulging and abutting against the ventral cord, and a hemangioma on C5, which would explain the numbness I get in my left hand at night. So I still need to investigate my other weird symptoms, and I'm really suspicious of Sjogren's, but gosh I hope that's not it either. And I want this pleomorphic adenoma out asap - it's benign, but it's slowly growing, and I just want it gone. I'll have to talk to the dr about the hemangioma - sometimes they're surgically removed or radiated if needed, but I guess they're rarely symptomatic. They're also usually in mid to lower back, not in the C-spine as often. I'm really surprised it didn't even mention my parotid glands other than the tumor in my left one. No stones, no mention of lymph nodes, nothing. I'm floored. But for now, I'm relieved. Much more relaxed. One day at a time. I would love to get the adenoma out before the year is up because my deductible is met, and I'm broke, but I'm sure that would take a miracle.
Swollen Salivary Glands
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Okay, this is weird. I would've sworn I commented here earlier today to update you on my MRI, but now I don't see it. I got the results on my chart today but haven't talked to the dr yet. No cancer or MS found, so YAY for that! I have some degenerative disc disease and some bulging in the C5-6 area that's abutting the ventral cord. I also have a hemangioma in C5 - a quick google told me those are benign, more common in mid/lower back, usually asymptomatic, can be surgically removed and/or radiated if needed. I don't think it said how big it is or anything. The C-spine stuff would explain the numbness in my left hand at night and occasional aches in/around my left shoulder, I think. I still have weird symptoms in my face, neck, scalp, so I'll pursue investigating those (I'm still really suspicious of Sjogren's). And I want the pleomorphic adenoma out asap. Biopsy said it's benign, but it is slowly growing, and I just want it gone. I'm amazed that the MRI didn't mention the parotid glands or any lymph nodes. Right now I'm relieved and grateful and looking forward to a wonderful Christmas with my kids instead of being filled with fear and dread and worried that I might orphan them!
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I'm so happy to hear that Cancer and MS are off the cards for you. What an immense relief! Thank you for letting us know
Hi there - I dk if you’ve looked up Sjögren’s syndrome - I’m not formally diagnosed but I’m treated for symptoms (eye drops) - and I even grew a weird little totally benign stone in my salivary gland that had to be removed in a quick op. Very odd ! We can have a higher chance of comorbidity with other autoimmune disorders - we all get so many things with fibro so it’s good to keep an eye on these symptoms . Wishing you all the best with this. I’m having to use special sugar free sweets as well. This cd be to do with anti depressants according to my Gp but I’m not sure 
who knows?!
who knows?!My next step is to look into Sjogrens. I’d be very surprised (and relieved) if I don’t have it. I have the dry eyes and mouth and other symptoms. Guess this is life after 50 for me? I wish you the best, too, all of you. Good health is so precious!Hi there - I dk if you’ve looked up Sjögren’s syndrome - I’m not formally diagnosed but I’m treated for symptoms (eye drops) - and I even grew a weird little totally benign stone in my salivary gland that had to be removed in a quick op. Very odd ! We can have a higher chance of comorbidity with other autoimmune disorders - we all get so many things with fibro so it’s good to keep an eye on these symptoms . Wishing you all the best with this. I’m having to use special sugar free sweets as well. This cd be to do with anti depressants according to my Gp but I’m not sure
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Hi @Geeena & @Jeans89: to take the thunder out of Sjögren's a bit:
A centre for rare diseases suspected Sjögren's & Hashimoto's was behind my Fibro.
All excited about the suspicion (hyped a bit by what my GP said) the professor in my rheum./fibro clinic said:
So what - it won't make any difference to you!
Whilst it may make a bit of a difference (e.g. 10% chance of cancer) I do sort of agree with his pacification:
My way of symptom analysis & trigger hunting wdnt be any different.
They were wrong anyway, my salivary glands are "OK" and my thyroid just has to be checked regularly.
I still have the dry mouth & often dry eyes.
For the mouth I use GC dry mouth gel,
for the eyes gentle Gua Sha massage with a jam lid.
A centre for rare diseases suspected Sjögren's & Hashimoto's was behind my Fibro.
All excited about the suspicion (hyped a bit by what my GP said) the professor in my rheum./fibro clinic said:
So what - it won't make any difference to you!
Whilst it may make a bit of a difference (e.g. 10% chance of cancer) I do sort of agree with his pacification:
My way of symptom analysis & trigger hunting wdnt be any different.
They were wrong anyway, my salivary glands are "OK" and my thyroid just has to be checked regularly.
I still have the dry mouth & often dry eyes.
For the mouth I use GC dry mouth gel,
for the eyes gentle Gua Sha massage with a jam lid.
TJB
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Hi All,
Im diagnosed ME/CFS & Fibromyalgia.
On my most severe flair ups (I’m never free of any of it) I get a lot of ulcers/blister type spots in my mouth, gums and rear of throat and nostrils. Along with with painful glands bottom under tongue. Very sore and stingy.
Also strange head sensations and eye pressure with painful pinging pain.
Im not aware of these as part of my diagnosis .
Anyone else getting all of this?
x
Im diagnosed ME/CFS & Fibromyalgia.
On my most severe flair ups (I’m never free of any of it) I get a lot of ulcers/blister type spots in my mouth, gums and rear of throat and nostrils. Along with with painful glands bottom under tongue. Very sore and stingy.
Also strange head sensations and eye pressure with painful pinging pain.
Im not aware of these as part of my diagnosis .
Anyone else getting all of this?
x
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Hi TJB - rather than saying all this are those 2, just cos it comes with the flares - which is unlikely,
I'd most definitely get all of this checked with ENT & eye docs soon!
I'd most definitely get all of this checked with ENT & eye docs soon!
TJB
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Hi,
Believe me I have seen both. I get absolutely nowhere apart from ‘it’s probably your me/CFS or fibromyalgia’ and I have pushed them on this.
Makes it harder that I need to see these people when I’m actually suffering at worst these issues on full relapse I can’t go anyway).
Often a diagnosis becomes the label they can’t get past.
Believe me I have seen both. I get absolutely nowhere apart from ‘it’s probably your me/CFS or fibromyalgia’ and I have pushed them on this.
Makes it harder that I need to see these people when I’m actually suffering at worst these issues on full relapse I can’t go anyway).
Often a diagnosis becomes the label they can’t get past.
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Drat! When I (occasionally) get your mouth stuff I wash my mouth regularly with calendula (Marigold) essence, that's then the only alleviating idea I can contribute. Or thinking it might be a generally challenged immune system: using anti-inflammatory supps & herbs.
Hope someone else has more ideas for you... I bet others do have them too (but for me that alone wdnt give me any comfort...)
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