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Old 01-31-2013, 05:08 AM   #1
Join Date: Jan 2013
Location: Wales UK
Posts: 2
Kaz778 HB User
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 Im 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.

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