Hello to All. I have to apologize here first. I came here several months ago with what was close to being a novel about my life and autoimmune woes. Several of you were so kind and unbelievably supportive, and I never responded. I'm so sorry about that. The skinny is that I homeschool five children, tried to cyber school this year, thinking that it would be easier on my health... It very much was not, and I had to pull them and make up for lost time. A very GINORMOUS (and belated) THANK YOU!" to everyone! I can't tell how much your thoughtful responses helped me!
I will give you the skinny version of my questions, and below I'll be my normal windy self, basically musing over my predicament with my doctors. This, in case your eyes glaze over after getting through the questions.
First question: I have been diagnosed with SICCA, Fibromyalgia, Raynaud's, Abnormal Involuntary Movement, and Idiopathic Neuropathy. At present, I'm most concerned with my tongue involuntarily moving, and it becoming increasingly more difficult to talk because I stammer and can't get the words to form. I have other neurological issues that frighten me, but this one gets the prize for Most Freak Me Out Symptom. It would give me great comfort to know that some of you experience the same symptom, and that I'll be okay because you're okay. Anyone have this?
Second question: The area of the right side of my face, where my parotid gland is, is constantly swollen and painful. I have been told that it's just that (a swollen parotid gland) and also, to the contrary, that it's my muscle that is swollen, and I've been told it's both. What is bothering most right now is that my chin has a small, painful lump in it and my gum line. It is also swollen and extremely itchy. My right cheek is also very swollen and itchy, with pain in the muscle and/or the parotid gland. The inside of my entire mouth is raw and swollen, including my tongue and taste buds. Is this "normal" for Sjogren's, or should I make an appointment with a doctor and pretend like they're not going to look at me as though I'm an alien hypochondriac?
That point brings me to my doctor woes, to which I'm certain you can all relate to in some way. Although this has much to do with the above questions, I'm going to end this post now, as it is long enough, it's very late, I'm on a mobile phone, and I'm hoping to post more, and visit more often now. I want to comment on some of your posts as well.
Thank you all for reading this. Peace and blessings, ~ Andrea
Hi Ripvanann,
I think you should make an appointment with a doctor and maybe a dentist too. With All the trouble going on in your mouth, you dont want it to cause damage to your teeth. And the lump on your gumline sounds like it needs to be checked out.
Hopefully someone else will post some ideas too.
Hi Andrea, Welcome to the Home for People Whose Doctors Think They're Nuts. It's a very cosy place to retreat to when the "normal" world is failing you.
Please go and get your mouth problems looked at. Dentist, GP, witch-doctor, anyone. It sounds nasty to live with and you need and deserve help.
Suzie
Dear Andrea,
You're in the right place for TLC and information.
I agree that your mouth problems deserve closer attention.
I hope you find the right professional to help you.
I have to say that homeschooling five children would be the total end of me, I'd be flying around the room with my hair on fire by the end of day one.
However, you go girl!
Keep us posted.
Hugs
Elaine
Hello RipVanAnn! What a great screen name!
My D-I-L also homeschools her three children -- what a wonderful thing to do with and for your children. She has my awe-filled admiration. And so do you!
Doctors only consider you a hypochondriac when they don't have the knowledge to diagnose you. When they call you a hypochondriac, they're really calling themselves inadequate. But that's another thread! 8) :D :-X
Please see what's going on with your mouth, and let us know! Thoughts and positive vibes your way.
Welcome back, Andrea! ;)
As others have said, this is the place for caring, understanding and TLC. I'm glad previous responses helped you. This is sort of like "home"- you can always come back and be welcome. 8) ;D
I agree- you have my awe-filled admiration, too, for attempting to homeschool five children and dealing with illness. Just homeschooling alone!
I would suggest you would want to get your mouth looked at by a dentist, first choice. Perhaps your primary doc, too. A painful, sore mouth can really be miserable, I know. Having some amount of odd-ball infections is common for us with Sjogren's, so you're not alone there, but the good news is that it can be treated and iradicated fairly easily most times.
See what's up with the mouth, and let us know, ok? Sending you positive thoughts and a hug.
Melinda
Well as to the 2nd question item: Could you have a blockage in the gland there? It may sound odd but it is very possible. I had an ENT tell me this the 2nd time I went back for a partroid gland so big it looked like I swallowed a tennis ball. Thankfully the 2nd antibiotic worked.
They have a way to flush the gland so if there is a blockage, it flushes it out.
Just a thought.
Hi Andrea--
The first 6 months I was sick, before I presented with Sjogren's, I stammered and stumbled over words like crazy. In fact, my first test was an MRI done by a neurologist. It was the scariest thing. I'm an academic and never been at a loss for words (haha) so to be stuttering over the word 'the' was a little much for me. I still have a rough time with word retrieval but the stuttering has become much better unless I've overdone it or are excruciatingly tired.
Good luck to you!
MB
Thank you all for your responses!
MB, you gave me some hope that this will go away! Thank you!
Pisces24, I don't *think* there's a blockage because I've had several ENT's, one dentist, and one oral surgeon tell me that they didn't feel any blockage, and that the swelling was due to irritation. I wonder why none of them x-rayed it, or did an MRI.. or whatever they do??
Meld256, Thanks so much for the warm welcome back! Please, no accolades about homeschooling... I have a strong sense that your admiration would fall to the curb if you saw me in action one day! :o
A66eyroad, Your DIL is a Lucky girl! :) I love what you said about the docs and hypochondriacs! Perfect! My screen name came from my husband, not too long after we were first married... he saw how much I loved to sleep, and now it's worse! :)
Carolina: Thank you, but who ever said that I wasn't "flying around with my hair on fire by the end of my day?" :) Most days I'm like that before breakfast is over. ;)
JellyB: Thank you. I'm going to try and see the dentist next week. The swelling has gone down a wee bit, but I know I should go. Thank you.
Andrea,
Glad to hear you will be seeing a dentist soon, and that your mouth is feeling a bit better. Hope you can get it checked out. ;)
Take care,
Melinda
Welcome back, You have been given some good advice. Please take care, and keep us updated on how things go.
susanep :)