Hi en bloc,

I am based in London in the UK - apparently there is one rehumy who has a special interest in Sjogrens, so I have my appointment with here.

I have a collection of notes dating from when this first began in 2011, I will organise and take along with me. I hope as I am paying for this privately that she will allow me to have the lip biopsy regardless of the lack of evidence in any blood results.

Another random question, which I seem to have flagged as a pattern, do hormones play a part in this illness? I without doubt notice a flare around the time of my period, is that common?

Thanks,

Kirsty

Many people with Sjogren's find this to be true. But I don't know if it has been confirmed medically, or what the mechanism of action would be causing the flare.

Kristy I haven't had a chance to read all that you posted but did either of the neurologist do a skin biopsy for small fiber neuropathy. This will not show on an EMG. I had a lot of your symptoms when I first was diagnosed with SFN. I did not get depression right away though. I think that came later after being in so much pain.

Hello all!

Some positive news, I met with a rheumatologist who specialises in Sjorens. Her first words were you can't discount Sjogrens based on the blood test alone (music to my ears). She carried out a schirmer test, which showed I was below normal in both, one much more than the other. She also did the saliva test which showed I was under.

I have been booked in for an ultra sound on my glands in two weeks and then we go from there.

@Hopeful, I raised the concern of the small fibre neuropathy with both neurologists but they said I did not show burning pain so it was unlikely. I know there are def some neurological things going but my hope is if I get the sjogrens diagnosis the neurologists won't just palm me off as a depressed young girl. (When I say young I am 30, but in these appointments with doctors they make me feel about 12, dumb and 12 to be precise).

Also En Bloc can I please ask you another sjogrens related question.

A big issue of mine is the dry nose. I have gone from someone being full of snot (due to allergies), to having pretty much nothing (which makes it very uncomfortable now my allergies have kicked in). Do you suffer with that?

Thinking about it logically my body has gone from receiving lots of mucus from my nose, mouth. Is there something you take to help with dryness of the digestive tract? Are there any substitutes I should be taking for what my body is missing from my saliva (digestive enzymes etc.?)

Thanks so much,

Kirsty

I do have extreme burning with small fiber. I happy for you that she is testing further. You are young but that does not mean they have the right to make you feel dumb. Do your research and you in there sounding like you are well informed. If they make you feel dumb nicely request the speak to you in laymans terms. I've worked with doctors who do that sometimes they need to be called out on it.
Good luck with the future testing!

Your sinuses absolutely suffer when Sjogren's is present. And the sinuses don't drain properly, causing more frequent bouts of sinusitis, etc.

There are many products to help keep the nose comfortable...saline sprays (make sure they are just saline, and not medicated. Also Ayr gel/ointment helps keep the inside of the nose moist, cutting down on nose bleeds from dry air and dry skin inside the nose.

There really isn't much you can do to replace saliva in your GI tract. All organs can suffer from lack of moisture. Just make sure to drink plenty of fluids. If you have GI problems, you really need to address them with a GI doctor for specific instructions. Don't add digestive enzymes unless you been tested and found they are deficient. Just focus on a balanced/healthy diet, fluids and if any problems arise, then get them checked out.

I also take a generic form of Mucinex, twice a day. This help to thin my mucus, which is very thick due to my severe dryness.

Regards, ElaineD

Thanks both! Am fully stocked up on products to help now - you have to be very organised with this illness hey!

Some further developments on my search for answer, the ultra sound actually showed severe shrinkage of my lacrimal glands. The partroid glands apparently look normal sized at the moment, so it seems to have attacked my eyes quite heavily first. Next steps will be lip biopsy which the rheumy says correlates with this.

I actually got a call from my doctor this week who said they had tested my blood for Lyme disease and it has come back positive, but I need another test to confirm this. I have read somewhere that this can test positive sometimes in people with auto immune disease, so we'll see what that brings too.

Just very happy to be moving forward with this rather than just being looked at like I was crazy. Hopefully if they can get to the bottom of it they can actually help me address the neurological issues :).

Thanks for listening!

Kirsty