New to Sjogren's, need help!
Posted , 9 users are following.
Hi, I have been suffering from dry mouth, dry nose and dry ears almost a year. I have a sore, swollen throat(don't have tonsils), my lingual tonsils are hypertrophied and filled with yellow substance, no doctor said what it was. My lymph nodes are swollen around the submandibular area but have normal appearance, I also have jaw pain, on and off gum pain, overall weakness, itchy skin. SO far I have seen ENT doctors and 2 Rheumatologists who deny I have Sjogren's. Meanwhile I am running low grade fever for a month already about 37.6C. Also my right ear is pulsating on and off. My blood test shows elevated markers for SS 2nd type but the 2 Rheumatologists just ignored it saying it's not enough for a diagnosis. Please help me if you have the same symptoms because my throat keeps swelling and I have trouble sleeping at nights.
0 likes, 27 replies
amkoffee ebvreactivated
Posted
If there were a cure for Sjogren's syndrome or a medication to take to control the disease then I can see where a doctor would want a definitive diagnosis before treating you. But there is no such thing and the only thing that the doctor can do is treat your symptoms. I had a negative blood test and an inconclusive biopsy but my rheumatologist is not put off by that because I have the symptoms. I am being treated for my extremely dry mouth and my dry eyes. And I've also just realized that part of my itchy nose is from dryness not allergies as I previously thought. So I am treating it with some saline spray as well as my allergy nasal spray. So I don't understand why a doctor especially a rheumatologist can't treat your symptoms. One thing about your ears you didn't say anything about them itching but itching ears is a sign of an allergy. And taking an allergy pill daily might help that if you have that symptom to. But be sure not to take something that's a drying like Benadryl.
Nu2this amkoffee
Posted
Hi amkoffee,
You actually answered a question I had asked in a prior discussion regarding allergy nasal sprays. I don't get an itchy nose but rather congestion and dry crustiness. I was told I don't have SS because the dryness focuses mainly in my nose. On a few occasions, I was given Bendryl through IV because I am allergic to contrast dye and sensative to novacain. Didn't seem to feel much of an affect at the time. Are all SS suffers sensative to Benadryl? If so what meds do you take in the event of an allergic reaction.? Thanks for the insight.
Tumtum1963 Nu2this
Posted
I take Benadryl or periton most nights. When I don’t my sicca is much the same but I don’t sleep as well. I use hyloforte eye drops (prescribed) up my nose as recommended to me by a Sjögren’s specialist last year - I mark the bottle so it’s not also for my eyes!
In addition to this i is I use a bit of coconut oil or sometimes Vaseline but only in my lower nostrils. My nose is still pitifully dry though as are my ears.
Nu2this Tumtum1963
Posted
Thanks Tumtum,
I use saline and saline gel for my nose but it is absorbed in a matter of minutes. I don't use anything for my eyes as they don't feel dry but I will have to ask my Rheumy for the drops you take. I think i will benefit frearly. Thanks for everything. God bless
Tumtum1963 Nu2this
Posted
I keep meaning to say - do you see an optician regularly? If not most high street opticians (I only know about UK) can check your tear break up levels and do a test to see what the mucin levels are like on the very surface of your eyes. Mang with Sjögren’s will only notice that there eyes are very dry because their meibomean glands are blocked or because their vision is off/ blurry. Many feel their eyes are extremely dry due to drugs like Amitriptyline and other antidepressants or pain meds or ageing.
But actually lots of others won’t even be aware of how dry their eyes are until they are thoroughly checked out using special dye and a magnifier.
Most with Sjögren’s will have 3 different kinds of eye disease goug on but could be pretty much unaware of two of these until corneal abrasions occur and start to impact on their vision. So you might be thinking your eyes aren’t dry or may have had Schirmers show normal levels of tears. But only a good optician or ophthanilogist will be able to really tell you.
aitarg35939 Nu2this
Posted
I use Clarinex, Elestat (eyes), saline spray followed later by Nasacort for all the regular allergies and keep Benadryl in reserve for severe allergic reactions &/or whole body itching. I've also had it IV in hospital for contrast medium allergy on CT scans, & so I could have steroids.
ebvreactivated
Posted
Ladies, Today I have a very swollen throat. Been to a doctor, he was puzzled he says he's never seen so severely swollen lymphoid tissues at the back of my throat. As i don't have a diagnosis yet, I don't know what it can be. I run a low grade temp with this. I want to attach a picture I don't know is its not appropriate the moderator may delete it. But would like to know if anyone ever gets this swollen throat. I'm in despair right now.