I was diagnosed with Sjorgens 2 years ago, saw a new Rheu and he says l don’t have it!
Posted , 6 users are following.
l have an underactive thyroid, lychens sclerosis and gluton intolerance plus clinical depression. l was diagnosed with Sjorgens syndrome over 2 years ago after my glands blew up like a hamster. Apart from the main symptoms of dry, sore and light sensitive eyes, l had a really dry mouth and the diagnosis also explained several other symptoms that had been plaguing me for years: muscle and joint pains; acid reflux, dry coughs, tiredness, fogginess, night sweats that came individually and in together in flare ups.
Having just had ECT (Electric Shock Therapy) l was feeling mentally really good, but, the rug has literally been pulled under my feet last week when l went to see the Rheumatologist my 3rd, who l have never seen before (all different guys) and literally within 2 mins of being in the office he was saying we should do a lip biopsy as he thought l had been misdiagnosed and didn't have Sjorgens, but l could continue with the hyrdrochloroquinine as it helps with the arthritis in my finger which is exacerbated when my fingers flare up.
I know it would be great not to have Sjorgens, but, all my symptoms are not just going to disappear, because of this.
I am still in shock as Sjorgens has been a big part of my life for 2 years. l didn't want it but l was learning to deal with it.
This is the first time l have been on a forum, but, has anyone else experienced this? My Psychiatrist has written to my Doctor requesting that l get a second opinion, as he felt the Rheumatologist handled the situation badly.
Thanks Yvonne
0 likes, 7 replies
margaret22116 yvonne17845
Posted
Sadly this happens a lot. I would be very wary of accepting this and change specialists. Ask for a written explanation of why he is challenging someone else's diagnosis.
margaret22116 yvonne17845
Posted
I mean if the diagnosis is being challenged before he has even seen you or done any testing what is the grounds for rejecting it?
yvonne17845 margaret22116
Posted
Thank you Margaret, l will try and clarify this with my Doctor tomorrow when l see him. lt just came out of left field, l knew that l wasn't considered someone with serious Sjorgens, but, it was enough to make my life very difficult.
l always knew it was difficult to be diagnosed!
Yvonne
wendy59632 yvonne17845
Posted
Hi Yvonne,
love have had Sjogren for some years now. They do the lip biopsy just to confirm as Sjogren as you know can take on many forms. And they could be treating you for something you haven't got. The doctor's that I've been seeing said that it is the best way to confirm it. I wish you all the best .
yvonne17845 wendy59632
Posted
Thanks Wendy
amkoffee yvonne17845
Posted
my lip biopsy came back inconclusive . so as far as I'm concerned it was a waste of time, money, pain, and I now have a permanent lump on the inside of my lip . fortunately for me my rheumatologist is smart enough to realize that it doesn't matter what a test says . I have the symptoms and since they're isn't a pill to take to cure you it doesn't matter. with Sjogren's all you're going to be able to do is treat the symptoms . so it doesn't matter whether you have Sjogren's or whether you have the symptoms for another reason, you have the symptoms . there are pills you can take to help with the mouth dryness and there are drops you can use to help with the eye dryness . I think you really do need to find a new doctor. hopefully you can find one that knows a little about Sjogren's syndrome. Because your rheumatologist does not understand that a test whether it's a blood test or a lip biopsy can come back negative or inconclusive even if you do have the disease.
Jalanez yvonne17845
Posted
How frustrating for you and nerve wrecking because now you must reevaluate your relationship with this dr and/or your diagnosis of Sjogren's...each being a colossal waste of time but here you are. I certainly have been in your position with another chronic illness. From my experience I can tell you that since you have 2 other rheum drs that have tested, or at least looked at your tests, and treated you for Sjogren's you can reasonably assume this dr is just going through "testing" motions. It is fully within your rights and reasonable that you would look for another dr willing to forgo the additional testing should you decide that you are comfortable with diagnosis and your original dr's treatment plan.
I remember that, although they are the specialists, I am still in charge of my own health care and I make the decisions on my treatment and who treats me. I hope that you find whatever decision you make that you are well cared for and your treatment helps you to feel the best you can.