I am a 32-year old female from Oslo, Norway.
Have a 5-year old daughter, happily married!
For the last 10-12 years I've been having pains in my muscles, neuro-pains, fatigue with headaches, dry and itchy skin (especially on my feet and hands), sheading hair...the last year or two, I also have experienced dry eyes, dry mouth and nose etc... All this have resulted in nothing from my doctor, she has diagnosed me with depression/anxiety, and says everything else is due to that....my bowel-problems she says is IBS, I feel it's not...
So, this spring, I finally got her refering me to see a neurologogist... He took some bloodsamples, they came out indicating SjS, and with all those symptoms he says it's a matter of time before he sets the diagnosis... Why not yet? The Schirmers is still inconclusive... :-\ Since I have so many symptoms, and positive SSA/SSB bloodtest, he thinks it highly likely that it will be in a few years...
Anyway....it's been a revalation to me reading about SjS, I find hooks for all my "issues"!! Saying that, reading in here about you poor people getting really heavy symptoms, I fear the future of my health with this disease as well... (Big, BIG hug to all you guys, by the way!)
I understand I am relatively young to get this diagnose, and being generally sceptical to medication, I am looking for alternative routes to go... Looking into (and gathering strength and motivation) to change my diet, as well as searching for a good homeopath.
Hoping this forum will give me inspiration to cope and self-cure the best I can!
:) ;)
Welcome!
You will find a variety of "issues"as you continue to read. We are taking various medications with various results. What works for one doesn't necessarily work for all.
Many see rheumatologists, some have been fortunate to see Sjogrens specialists.
Please know that you are not alone! We all feel for you.
Welcome N79!
I'm glad you've found us, but sad you had to.
You've done so well convincing your doctor to refer you to a neurologist. I hope that next time she sees someone with a similar array of symptoms she doesn't try to fob them off with 'it's depression' or IBS or ...
Many people here have a SjS diagnosis without positive blood tests, so I really don't understand why your neurologist is so cautious. As you've already read here, there are people who have severe dryness issues and others who don't; some have neuro symptoms and others never develop them.
Lots of people here have success with homeopathy and other complementary therapies; others have to accept that they need more 'aggressive' treatments. That's one of the roads that we have to travel. For many years I never used any allopathic medication but relied on acupuncture, homeopathy, diet etc. Now I need steroids and immunosuppressants, and I accept that. I try to eat as healthily as I can and help my body to deal with the meds.
SjS is an odd condition with lots of unknowns. You will have times when you fear for your future health, and that's when you should come here and share your thoughts with us. But also come when you have any little questions, or when you have happy times and feel better. We try to share it all!
Thinking of you - Chickpea
ps What a joy a 5 year old daughter is! My 22 year old daughter has just come home - we live in Brighton on the south coast of England - from a year studying in the USA. The pleasure of her company never ends - you've got years of happiness ahead with your daughter!
hi there! i am new too! ;D i do not have a diagnosis.. I am a 40 year old female. my ANA RA sedrate and lyme all came back normal. I scored a 3 on the Schirmer test tho. I have had psoriasis since 9. low vit D. I have on and off patches on the roof of my mouth that i feel are vascular related. geographic tongue. dry throat not mouth. i have the strangest pain in my upper/mid back to neck.. very hard to explain. like sudden swelling and stiffness. i feel like i am being choked. Left side of the neck swells, tonsil hurts and tongue pain. seem all related. the front of my calves..veins feel like acid is running through them and darken. My eyes get puffy esp the rt one. Looks like a pocket of fluid under it. swelling of rt cheekbone, tender bones around eyes. when i get active or stressed.. the swelling occurs everywhere and my eye veins bulge and hurt. feels different than the dry eye..cant explain it. i had an echo..normal. cat scan of sinus. mri of orbits and spine.. i do have arthritis and rev curve of neck. had some recnt bloodwork come back showing kidney issues..could be dehydration tho? i cannot lose a pound..just gain.
i feel like i am physically dying at times. i think the worst part is getting normal results back on things..but the thought of having more tests done.. brings anxiety of the unknown. i would prob get a neg on the lip biopsy!! >:(
i would love love some input too!!
help!! does any of this sound familiar to any of you? ???
Welcome norwegian79 and liv4ever. I use alternative therapies as you can see by my signature. Finding what works for you is key to obtaining management. Spoon Theory is a good read for the ups and downs.
hi and thankyou for that welcoming! I am having trouble navigating here. and trying to post a new topic. took me a while to do this reply!
=)
Hi Folks,
Welcome to the forum!
I am from the states but from what I know is that there are rheumatologists here that will either diagnose or treat based on symptoms and won't require a lot of positive bloodwork so that may be a route to consider. It may take a while to find the right person to treat you but I would encourage you to pursue someone who is willing to do that. Here, teaching hospitals are good places to start as they are very thorough....
Let us know how it goes.
Rachel F.
Hi, and thanx so mych for all lovely replies! :D
I see I have done a slight mistake in my initial introduction, I have seen a rheumatologist, not a neurologist... ;) Went to see my new GP today, she was quite shocked my old doctor hadn't done the bloodtests herself, that the rheumy had to do them...she felt my symptoms were quite obvious... ::) Oh, well, at least now I have an idea what I'm dealing with, and it's NOT my old doctor! ;D
Lately I've had big problems with fatigue, it's an agony having to get out of bed, having to lift my feet to walk to the shop etc... So, going to work is heck... But hey! At least I have a job at the mo!! 8) Also, PT at my gym has found brilliant exercises for my back and shoulders, and my naprapat is doing her wonders as well!
Will read more in here...when my eyes are up to it...in other words, not today...half an hour to do the necesary things online was enough today...
Again, thanx so much for all your replies!!! :)
Hi norwegian79 - welcome! :D
Have any of your doctors tested your thyroid? When that is out of whack, it can cause extreme fatigue.
As you will find in your reading here on this forum - it can be so frustrating for people to know they have odd symptoms and the doctors just chalk it up to depression/anxiety.
The part that confuses me is if you have the positive blood work, why is the doctor waiting to set a diagnosis? That seems strange.
Good luck with your new GP that you saw today. If you feel she is listening to you and willing to work with you to better your health, keep her!! ;D You want to build a team of doctors that will help you and support you.
This is a worldwide forum - made up of both female (90%) and men too. We come from all walks of life and range in age from 6 to 70's - maybe, even 80's - not sure on that.
I hope you find this site helpful and informative to you. You might even pick up some great new friends along the way. ;D
Bucky
Bucky: My Thyroid is fine, I have kept that monitored for quite some years because my mother takes medication for it... But thanks for mentioning it! :)