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Sjogrens or MS??

Hi, The other day I posted about my 17 yr old daughter who seemed likely to be diagnosed with MS, following ADEM 3 yrs ago, and on-going MS type symptoms (fatigue, joint pain, stumbling, pins and needles, ON, diplopia, l’hermitte’s, etc etc).

Yesterday we went to see a consultant rheumatologist because of her joint pain. They now are questioning whether she has Sjogrens syndrome - apparently this can show up as lesions on brain and spine in MRIs, and it can cause fatigue and joint pain. My d has increased antibodies (called SSB/la) which is an indicator - but apparently pple without Sjogrens can also have this antibody present.

BUT - Sjogrens usually starts for pple in their late 40s and older, and is characterised by dry eyes and mouth, which my d doesn’t have, plus fatigue and joint pain.

So now we are in a whole new turmoil - Sjogrens has an increased likelihood of some nasty cancerous side-effects.

Does anyone have any insights into this? And any advice about what our next step is?

Thank you!

V

Hi there,

Although it’s not necessarily the fastest route to answers, the NHS do tend to like to exhaust one line of enquiry, before they start another, which is at least methodical.

There is an element of luck involved: a journey that starts at Rheumatology may well end up being a neurology problem, or vice versa. I was referred to Rheumatology initially, but discharged because they couldn’t find anything, well before I was ever diagnosed with MS. But it wasn’t a “mistaken” referral, as such, because it was consistent with all my symptoms at the time. It just so happened it wasn’t a Rheumatology problem.

In your daughter’s case, however, it looks as if they have found indications suggestive of a rheumatology problem, so she might be in the right department first time. I would certainly bear with them, and see what they propose as the next steps, before looking elsewhere for answers.

Try not to worry too much about the possibility of rare, but serious complications. A very quick look at the statistics suggests 5% of people with Sjogren’s go on to develop a form of lymphoma. Which means 95% - the overwhelming majority - don’t. (Don’t forget the overall risk of a person getting cancer at all, from any cause, is a lot higher than 5%, so a Sjogren’s diagnosis wouldn’t make a lot of difference to a person’s lifetime risk).

With any serious, or potentially serious condition, one thing that doesn’t help is dwelling on everything that might happen - because a lot of it might not. It’s better to tackle things as they arise.

I would certainly discuss with her consultant your concerns that your daughter doesn’t seem to fit the “typical” Sjogren’s profile - including not having some of the classic symptoms. It may be something that can present in a number of ways (much like MS), and not everyone always gets the hallmark signs.

Tina

Thank you Tina - that’s very helpful. I will get a grip (tough when it’s your child… but essential, I know).

Best wishes
V

Hi Vicky I understand completely your fears for your daughter. Last November my then 14 -year-old son was taken by me to the hospital with suspected appendicitis. That is what the doctor’s all initially thought it was. The following day he was taken down to theatre for a routine appendectomy. Anyway several hours later he still wasn’t back! Eventually we were told he was in ICU and that they would take us to see him. We had no info as to what was wrong at all. Five hours after the op started we finally saw a doctor! Apparently his bowel had perforated and they had to remove a quarter of the large bowel and a tenth of the small bowel! It later transpired that this had happened due to Crohn’s disease. He was in ICU for 24 hours. The very worst time of my life. He recovered very quickly after that like only a teenager can! He is now fantastic but my whole point is that I understand that there is nothing like the fear and worry that illness in your children produces. I empathise fully with you and hope that they can find out what is wrong with your daughter asap! Keep your chin up Teresa xx

Hi, Sjogrens is an autoimmune disorder and many people with sjogrens already have another automimmune disorder.

Has your daughter been tested for systemic lupus? These results can be found with lupus. Rheumatological and neuro symptoms can often cross over and often it takes time to define exactly what is going on.

Many illnesses can cause an increased cancer risk. One in three of us will get cancer in our life time. So please don’t worry about what may happen in the future.

I know as a parent with a daughter who has various health problems how much you worry and want to make things right. The best thing you can do is support her and not let your fears transfer to her.

Jacqui

xx

That would be a real duble whammy, wouldn’t it, to have TWO such illnesses? Life, eh?

I asked about lupus and they said no to that - though I’m not sure if they have tested and found that she definitely doesn’t have it. The dr we saw rang up again yesterday as had forgotten some other blood tests he should do to “confirm or unconfirm” sjogrens. I think I should call him to clarify the lupus question - a couple of pple have asked me that question now.

And no, I’m really careful not to let my d even KNOW I’m worrying about her health - mainly because she would be terrified, and I think this should be a really carefree time for her. She’s planning to go to uni in Germany (because it’s cheaper than here!) and I want to say “NO! Stay here where I can look after you!” but I bite my tongue and don’t! What a worry they are!