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Kaz778 01-31-2013 05:08 AM

Sjogren Syndrome
Hi everybody, my name is Karen and this is the first time I have been on a forum. I am sorry if this all comes out garbled, but I do not know where else to turn as I seem to have all the symptoms of Sjogrens Syndrome, yet my tests so far have come back normal. I have infections of the parotid gland often and my glands on the left side of my neck always seem to be swollen, I have had this for 6-7 years. After a scan I was told that the gland is enlarged and bigger than in most people but nothing to worry about. The glands on left side of neck are almost always swollen and I have difficulty swallowing, I always have water to hand. I also have pain from neck (where glands are) up to my ear and across the left side of my face. I have been put on Amitriptyline for this and I find it does help in the night before bed. I have also had a brain scan because I seem to have a headache on most days, but this came back clear. Two weeks ago I had a Schirmer test which I was told is ok and blood results back today which were clear and now I have been referred for a lip biopsy. I have been told that if the biopsy comes back negative, then the Rheumatologist thinks I have Fibromyalgia. My symptoms started between 6-7 years ago, not long after a holiday to West Africa (I am wondering if this has anything to do with how I feel). However, after typing my symptoms into a search engine I found out about Sjogrens and I have most of the symptoms. Symptoms include – Forgetfulness (forget what I’m talking about mid-flow in conversation and need prompting to remember); dry mouth (not even enough saliva most of the time to swallow), dry itchy eyes, sometimes blurred vision and occasionally my left eye droops resembling an extremely tired eye; vaginal dryness (I was told after a smear); constant infection of the parotid gland (at least for last 6 years); feel exhausted all the time (even after 12 hours sleep) and I could easily sleep after being awake for 8-9 hours. I always have broken sleep and quite often I wake up soaking with sweat and then I find myself shivering. I am 43 years old and do not think that feeling this tired is normal for someone of my age. About 5 years ago I was told that I have gum disease (now have 3 loose teeth) despite looking after my teeth really well e.g flossing everyday, scale & polish every 3 months. I was diagnosed with irritable bowel about 15 or so years ago and I experience pain in stomach with a queasy sickly feeling quite often. I tend to get really itchy legs and have a patch of dry skin by my ankle which has been there for about 2 years, GP says just put some moisturiser on this (I always have done). I also get, mainly in the evenings, a burning sensation of my knees. To touch they feel like they are on fire! And to look at, they appear scorched (severely red). The Rheumatologist said I do not have Arthritis. I seem to be allergic to everything, recently I tried giving up smoking and I am allergic to nicotine patches, tablets and have a reaction to most antibiotics. Quite often I need more than 1 course of antibiotics to clear infections (mainly throat infections). My joints and muscles really ache almost all of the time and when the Rheumatologist tested my reflexes, I found a few days later, that I had become bruised where she had tested. I have also been experiencing tingling in my hands through to my elbows, mores so when arms are raised holding phone. At the moment, I use natural salivary stimulant pastiles, artificial tears for daytime and eye ointment for bed and Ibuprofen gel to rub on my knees when I have the burning sensation. Please can somebody give me their opinion as to what I should do next.

estelle454 01-31-2013 09:10 PM

Re: Sjogren Syndrome
Have any of the doctors done a cat scan of abdomen and chest to see if you have other swollen lymph glands?

Kaz778 02-01-2013 05:03 PM

Re: Sjogren Syndrome
Thanks for replying, No I have only had two scans on the swollen glands in my neck.

estelle454 02-01-2013 06:28 PM

Re: Sjogren Syndrome
So what did they say about them, ? maybe biopsy to double check if nothing else. People with sjrogrens have higher incidence of lymphoma. Not that I want to scare you but no from experieince things can be mis diagnosed and missed. hope this helps. My advice to anyone here that has sjrogrens and swollen lymph glands, is look further and have ct of chest and abdomen. xx

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