Sjogrens and graves: Hi I have just come back... - Thyroid UK

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Sjogrens and graves

Rush2112 profile image
7 Replies

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

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Rush2112
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7 Replies
MaryF profile image
MaryF

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

Rush2112 profile image
Rush2112 in reply toMaryF

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

MaryF profile image
MaryF in reply toRush2112

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

MaryF

Jackie profile image
Jackie

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

Rush2112 profile image
Rush2112 in reply toJackie

Thanks Jackie

Do you have there web address

Jackie profile image
Jackie in reply toRush2112

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

Jackie

faith63 profile image
faith63

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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