sjogrens syndrome
 

Hi,
I was wondering if any of you out there suffer with sjogrens syndrome as well as MG?

I haven't been diagnosed with it, but then I haven't been diagnosed with MG either LOL. However today I have been looking on the internet as my dry eyes are getting worse. They are burning and feel gritty. I found a website for an American Sjogrens group and was amazed at how many of the symptoms I have. But it looks like its another fun thing to diagnose as no one test is 100% positive.

The other symptoms I have is dry skin, tingling and numb hands and feet, reflux and some dryness in the downstairs lady dept! Plus the memory loss and brain fog.

Anyway as I ramble on I was wondering if anyone else suffers from it and how easy was it for you to get your diagnosis?

At the moment I dont know if I can be bothered to contact my gp about it as Im sure he thinks I spend every minute of everyday looking for an obscure new symptom. They obviously haven't heard of overlap!

Thanks in advance

Rach

Hi, Rach. You know how too much Mestinon/acetylcholine can cause drooling/increased saliva? Well, not enough and you have a dry throat. That's one possibility. Hormones is another. And it could be Sjogrens.

You could ask the eye doctor to do a Schirmer's test. They put those litmus type things in your eye and see how much tear production you have.

The numb hands and feet sounds like paresthesias or peripheral neuropathy. How is your B12?!!! Since your doctors don't like doing the work of actual doctors, maybe you could get yourself some sublingual methylcobalamin. Take it for a few months and see if those symptoms are better!

I know, sometimes it's hard to determine what is from what. I wish you had better docs but, hey, you're working on it! ;)

Annie

Hi Annie
 

Ive had the test where they stick a bit of paper in your eye and was told I have dry eyes and thats as far as it went.

Ive asked for a B12 check but thats yet to be sorted by my GP.

Thanks for your help Annie.

Love
Rach

I'm scheduled for lip biopsy of salivary gland to check for Sjogren's. Big chance of permanant numbness because of nerve cutting, but guess I need it done. Sjogren's.org is a great site for info.

Just wanted to add that Sjogren's is serious and can cause damage to internal organs. You need to be monitored closely. No good meds, but anti-malarial and immuno-suppressents.

Hi Annie,

I hope your lip biopsy goes ok and fingers crossed you dont get the nerve damage.

My vision is poor again so I will keep this short, I was better earlier this evening but its now 2114, so Im struggling.

My mouth isn't dry all the time, sometimes I think due to the mestinon its too much. But sometimes my mouth is so dry I feel like I wont be able to move my tongue and my throat dries out.

The dryness just really affects my eyes the worst. How did yours start?

Thanks for replying to my post I really apprecaite the time you have taken to respond to my query.

Love
Rach

I have been diagnosed with MG and have dry burning eyes when the mestinon wears off. Mestinon makes my dry eye symptoms go away.

Hi

Thanks for this.

I have found mestinon makes no difference to how my eyes feel, which is gritty, burning and itching. Its all day everyday at the moment.

I have a Drs apointment next week, I hope to discuss it with him then.

Love
Rach