Thyroid UK
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Sjogrens and graves

Hi

I have just come back from neuro as I have no reflex in left foot and couldn't feel pin being put in I was really hoping he would look into my b12 as I have a family history of pa my b12 is 288

He was very through with examination checking all reflexes

And he says I do have nerve damage in left foot and he has ordered for me to have nerve test but he said my b12 is to high for pa he said he feels I have Sjogrens and has ordered blood test for this and rhematoic arthritis he reluctanly put on test for b12 but I know what this is has I have only just had test for that

Done there dosent seem to be a good sight for sjogrens in uk and wondered if any one has it and do the symptoms of joint pain foot numbness ect go with it

7 Replies
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Bearing in mind your foot drop, and your Sjogrens Disease and Graves disease, please as you are in a round of testing, apart from D, B12 and iron, please get them to do a test for Lupus ANA, and also for Hughes Syndrome/APS. The tests are not difficult, any Rheumatologist or doctor will understand the ANA test but also the test for Hughes Syndrome, a cousin of Lupus where patient frequently also have a Thyroid problem and Sjogrens, the tests are as follows, but please take the forms to hospital so the tests do not hang around as they are a tad sensitive: hughes-syndrome.org/about-h...

If you do have Hughes Syndrome/APS, come back to me as I can help. I help run a forum for this, and many of our members are on TUK for the excellent Thyroid support and vice versa..... MaryF

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Hi Maryf

My daughter has sle Lupus she was diagnosed at 8 and is now 26

So I'm pretty clued up on lupus as she has been very ill over the years and we nearly lost her a couple of times I don't think its lupus as I do not have some of key symptoms my daughter has frequent low grade fevers by frequent I mean 1-2 times a week and also almost perment mouth ulcers along with all the cross over symptoms

The blood he took today does include ana plus a lot of anti immune bloods

I have had ana tests before but first one.came back weak potive secounds negative

But then my daughter has occasional had a negative one and she defitantly has lupus

on nhs website it did say one intresting thing under complications is that sjogrens patients may give birth to babies with lupus ?

I have never heard of hughes syndrome I will google it

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Please look at Hughes Syndrome foundation, disease also known as Antiphospholipid Syndrome.... a nasty cousin of Lupus.....

MaryF

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Hi I have severe Sjogrens and no foot pain.The best info is from the small society, there may be more now.You can get what you need on a script ie toothpaste, gel, mouthwash, eyedrops.

Jackie

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Thanks Jackie

Do you have there web address

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Sorry no but I found it easily ,it is in Birmingham.

Jackie

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interestingly, you have not mentioned the key symptoms of Sjogrens..i doubt you have it. Drop foot is nerve related. I have seen it happen to my brother in law with a spinal cord injury. B-12 does effect the nerves for sure.

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