Sjorgens Syndome

[appy45]

Well, after having the symptons for well over a year, my Dr sent me to hospital eye dept, as she said she thought I might need tear ducts unblocked. When I told the eye consultant all my symptons, he asked if I'd heard of sjorgens syndrome. Hurrah, at last. But now I have also been told I have Trimerical Neuralgia. Not been referred to neurology dept. Think I will have to go private. But would like to know if anyone on here has either of these , and are they anything to do with my hypothyroidism. I am scouring the internet to find out more. Thank you in advance. Joan

[Fruitandnutcase]

Do you mean Trigeminal Neuralgia? I think some people who are hypo get it - see this discussion (If my link works!)

healthunlocked.com/thyroidu...

[helvella Administrator Thyroid UK in reply to Fruitandnutcase]

That is a good starter link.

For further posts you could follow these links:

Search of posts on Pernicious Anaemia Society:

healthunlocked.com/search/t...

Search of posts on Thyroid UK:

healthunlocked.com/search/t...

You should NOT have to go private for Trigeminal Neuralgia.

This NHS link has some information and links to more - but there are many other sources as well:

nhs.uk/conditions/Trigemina...

[appy45 in reply to helvella]

Thanks Helvella,. will check out all the posts you said. Why pernicious anaemia? I would never have thought of looking there.

Thanks for your response and help.

[helvella Administrator Thyroid UK in reply to appy45]

Because low B12 can and does cause nerve damage. At least some Trigeminal Neuralgia (or similar issues) could be the result of such damage.

If that is the cause, proper treatment will help to stop further damage.

[appy45 in reply to Fruitandnutcase]

Thank you for your reply. The link did work. Very interesting. Shingles and tinnitus were mentioned. Had shingles about 7 years ago, and tinnitus started about 4 years ago. About the T N,. Started about 4 weeks ago, pain down left side of face, the stabbing pain near ear. I took paracetamol. Did ease it , but didn't want to keep taking it. Decided to phone Dr next morning. During night had to take more paracetamol, ended up over sleeping. Rang dr late. They rang me back asking about my symptons, and said get to surgery soon as I could. She gave me Carbamazepine, 100 mg , 1or 2 twice a day. Face pain now more or less gone. But woke up about 4 in morning. Felt like needles exploding all over scalp area. Didn't last, but was still painful. Saw dr again. She said 200' twice a day . Sleeping through the night now, but still feel headachy. I'd just like to know how others manage it, as don,t really want to keep taking these tablets.

Again, thank you for your response, very helpful.

[Bluedragon]

Hi, I can’t comment on the TN (other than my dog gets it with ear infections and I give him a herb tea I make for pain and inflammation as well as standard treatment). I can recommend Sally Pachlok’s book that was mentioned in one of those TN threads (I read the 17 reply one) and urge you to read it - Could it Be B12? Do your own research, like thyroid, B12 deficiency is little understood and badly managed by doctors.

I am currently being investigated for “likely primary Sjögrens Syndrome”- again only because I put the dots together even though dr disagreed I pushed for rheumatologist appointment. Difficult to diagnose. I am one of those people who are negative with the anti bodies. Didn’t help that the locomotive rheumatologist on first appointment didn’t know how to do Schirmers test and again put it down as negative - aargh! He wanted me to have lip biopsy and off I went to Maxocillofacial (? Spelling) who put me on waiting list.

Come 3 mths, still on list and go for follow up rheumatologist appointment- this time with typed out list on medical history and details of what NDT is - locus didn’t know and got history muddled. Lovely man though.

This consultant advised against lip biopsy! Ultrasound to be booked instead.

Basically- what I’m saying is, expect investigation into SS to be as torturous as everything else!! They keep calling it likely- I wonder how long it will take them to confirm it if they ever do. I won’t take their nasty standard meds for it anyhow if can possibly help it - I’ll work out my herbs for it.

My symptoms I hear you ask - parotid (salivary) glands swell both unilateral and bilateral - sometimes like a hamster. No blockages found and had for over 10 years. I don’t cry - realised a year ago with the film Lion. So, lacrimal glands knackered. (Eyelid glands work so do secrete some moisture). Dry mouth, broken teeth. At first I put this down to thyroid. And dysparunia - i’ll Let you look that one up!

Hope my rather long post helps! In the meanwhile they have given me a px for eye and saliva drops.

Jo

[appy45]

Hi Jo, Thank you for your reply. Very helpful. Not feeling to good today, been awake since about 5 am, pain on scalp area back again.

It was the opthamologist { spelling ? } who finally agreed I have SS. He said to use an eye bag, and carry on with the eye drops I use, as he said they were good ones. [ and expensive ] Said he would write to my Dr. I saw her a few days later, but she said she hadn't heard from him yet. Think I will have to beg to see a rheumatologist ! I went to see her, as few weeks ago had chest infection, she put me on penicillin , but it hadn't cleared up. She said my chest was clear, although still coughing up phlegm. I know I have hoarse voice with SS, but never had the cough before. Learning all the time . Like you, all 3 blood tests I had, anti bodies ok. I had problems with mouth ulcers a few months ago, when having new dentures. Got so bad my dentist took photos, as she said she'd never seen anything like it. I should have asked for a copy.

Not heard about parotid glands, but will look up . Have small lumps or swellings at back of tongue, on the sides.

Again, thanks for your help. Writing it all down , ammunition for next appointment with Dr.