UPDATE! I was able to get an appointment with a rhuemetologist at the Mayo Clinic in Jacksonville!!!
Thank you everyone for sharing your information and experiences with me. Just knowing we are not alone helps so much ♡♡♡♡
I live in the US and I am currently away from my home and taking care of my 80 year old Mom who injured her back. I have no primary doctor or rhuemetologist nearby. Appointments are impossible to get right now.
I have primary APS. I recently started getting a very dry mouth, throat, and sinuses. So much so that it creates a sensation of a lump in my throat making it seem difficult to swallow. I had a video visit with my rhuemetologist, who called in blood work and I was tested for Sjogrens antibodies on March 5th. The test came back negative. I was seen twice here at the ER. All of the regular blood work is normal. They did xrays of my lungs and abdomen which were clear. The ER doc suggested I may be sero negative for Sjogrens or too early on in the disease process to thr antibodies to be detectable.
I have lost close to 20 pounds in a very short period of time. I am living on protein powder smoothies, glucerna, boost, runny oatmeal,, rice, yogurt and water. When I try to eat something solid my saliva glands do not produce saliva. This morning I had to eat a part of an English muffin by adding water to it in my mouth. The lack of saliva is intermittent. I followed the ER doctors suggestion and picked up xylitol gum, toothpaste, and mouth rinse, as well as sour candy to keep my saliva flowing.
Can anyone share their experiences with me? Also what liquid high nutrition foods or shakes can I try? I need to stop losing weight. I need to get strong so I can care for my 80 year old mother.
Thank you in advance ♡
Irene
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Piscesdreamer
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Hi, the first thing I would say, do please stay in contact with your medical consultant while you are away, so they can continue to help you. If you are on Warfarin you will have to be very careful as to what you are adding into your diet. You consultant may have some ideas for what you could eat etc in liquid form. Perhaps you could also see a dentist as they will check what is going on with your saliva, as not good for your teeth to not have help with this. I am enclosing this for you: sjogrenssyndromenews.com/20... I hope your mother recovers quickly. MaryF
Hi, I have secondary SS and I find saliver spray helps before eating, certain foods make it worse, trial & error I'm afraid. (Pork, breads, dry foods etc).The key with me with SS, is not to over do it, stress as well can flare.
So take it steady, look after yourself and give yourself rest time too.
My primary disease is Sjogrens Syndrome. I had repeated positive ANA since being in my 20’s. Lupus then Fibromyalgia then APS began later one at a time.
Initially I was ‘diagnosed’ with ME and sent to an ME specialist. Having read up on it I never felt it described me. The first thing the specialist said was “I don’t think you have ME, let me do some bloods!” Three tests later he confirmed SS and stated I had some markers for Lupus.
I had suffered pains in my knees since I was 10/11. Then from 11 daily headaches. Always had problems with periods. My eyes have always been dry and I’ve always needed to wear sunglasses always being photosensitive. By the time I was in my early 20’s I started to feel exhausted, which had got worse and worse.
I often felt the ‘lump in my throat’ sensation. No one has ever given me an answer for that. So thank you!
I have always needed a large glass of water with my meals and coughed a lot during meals too. It has just all been normal to me since childhood.
I’ve never been unable to eat and my inability to exercise over the years has caused weight gain. I can’t say I avoid any foods I just drink a lot!
I have not tried any sprays etc, try to keep good oral hygiene and regular dentist check ups. I use sugar free gum when my mouth is very dry and have learnt to eat it discretely (No rude chomping here).
Sorry I can’t help more. If weight loss is an issue for you, your GP should be able to prescribe ‘build up drinks’. Stay in contact with ur GP and make sure they are aware of all symptoms and new symptoms including your ‘lump in throat’ so it can be scanned.
I wish u lots of luck. Please don’t be afraid to eat, just find ways of moistening your mouth (eg drinking lots) try not to get stressed over it.
I always find it easier to live with, to understand a condition I have, so reading is always good, providing it’s a reputable source.
Wow! I too have always had to wear sunglasses. It is terrible!I had always had dry eyes, but that went away when my rhuemetologist started me on hydroxychloroquine.
I had knee pain in high school and a sports medicine surgeon removed the synovial plicas in my knees athroscopically, now that you mention it,, I wonder if that was an early symptom.
Heavy periods, like you.
My other symtpoms are all recent within the last year or so:
Vaginal dryness and painful intercourse. I.am post menopausal.
Intermittent dry mouth, throat.
My ear canals often feel constricted.
Lump sensation in my throat.
Intermittent ability to produce saliva
....
I have an appointment at the Mayo Clinic April 2nd.
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Oh! The joy of being a zebra!
