Author Topic: Could I have Sjogrens? Weird symptoms no doctor can explain  (Read 17529 times)

irish

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Re: Could I have Sjogrens? Weird symptoms no doctor can explain
« Reply #15 on: January 07, 2010, 09:32:18 PM »
sr, I know the feeling. I have had more docs than I can shake a stick at who thought I was crazy. Pretty much 30+ years worth.

Do you have the ability to get to a teaching university? These docs like to see strange symptoms as it gives their residents and med students a chance to "stretch their brains". Generally the docs at Universities are not as apt to label someone a hypochondriac.

It takes lots and lots of time to find good docs. If you can find one good doc you will be directed to other good docs. It took me many years to find my immunologist (I was referred to him by my very good ENT) and then the immunologist referred me to a very good pulmonary. I have to drive 80 miles one way to see them and to have my gamma globulin infusion once a month but will do this as long as I can. My hubby sees the pulmonary also. We have gotten into a good group of better docs in the twin cities and are so lucky.

Just keep making appointments and don't give up. I would try for one new doc to start with. This way you don't have all that confusion with medical records, etc. It is so much darn work having chronic illness. Both my hubby and I spend a lot of time in the doctors office and I get so I could scream some days.Good luck and let us know how you come out. Irish ;D

Billydude

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Re: Could I have Sjogrens? Weird symptoms no doctor can explain
« Reply #16 on: January 12, 2010, 10:26:28 AM »
Hi SrThoms....I have a couple of youtube videos that explain my symptoms.   Its easier for me to give you this youtube link than describe them here.
Here it is...
http://www.youtube.com/watch?v=8AG3tcYUfvs

Rostradamus

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Re: Could I have Sjogrens? Weird symptoms no doctor can explain
« Reply #17 on: January 13, 2010, 06:29:05 AM »
Yes as suggested more test might be in line. Labtestonline.org can put you into groups of related tests, what they are looking for,etc. As to your strange symptoms, sometimes that can be helpful, narrowing down the too many possibilities to which symptoms co-exist and which don't. Keep in mind the posibility that you may have more than one thing going on.  The best symptom checker I've ever found is in the web site Wrongdiagnosis.com . It can check up to 6 symptoms at once. Very useful. And you can alter them as you go. A very good process of elimination. It could save you years of fumbleing around.  Also a tumor in the wrong spot can cause alot of your visual symptoms. If you start getting severe or repetitive head aches a brain MRI is a good safeguard.  Better safe than too little too late.  Do keep a dairy of symptoms. It will be very helpful to relate to doctors. Very good luck. Check out those web sites. Gotta go back pain past even break-thru pain meds. Will ceck in on you later and see if I can think of anything else helpful.  Post you results on your symptom check. We'll all aply our experiences. There are many good caring poeple here. Glad you found this site. Best hopes and prayers are with you.

srthomas21

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Re: Could I have Sjogrens? Weird symptoms no doctor can explain
« Reply #18 on: January 13, 2010, 08:28:56 PM »
Billydude, thanks for the video, I'm not having any of those symptoms. 

My main problem is the weird light rays and light sensitivity.  I also have head pressure quite a bit. It seems to be mostly in the back of my head and it's kind of a fullness feeling. Really annoying.

Thanks for all your support, I did make some appointments at the University of Utah which is a really good med school and hospital. I made an appointment with a neuro ophthalmologist and a rheumatologist.

Will keep you updated. If anyone else has any ideas let me know.

geofftennis

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Re: Could I have Sjogrens? Weird symptoms no doctor can explain
« Reply #19 on: August 21, 2010, 05:50:09 PM »
HI SRTHOMAS21
HOPEFULLY YOU GET THIS MESSAGE ITS BEEN A LONG TIME SINCE YOU FIRST POSTED YOUR MESSAGE .
I ALSO HAVE CELIAC AND HAD SIMILAR PROBLEMS TO YOU AND THE EYES AS WELL AND MY WHOLE FAMILY SO I DO HAVE A BIT OF KNOLEGDE ON THIS SUBJECT.
YOU POSSIBLY SHOULD CHECK FOR A CANDIDA RELATED ISSUE{BACTERIAL OVERGROWTH}BECAUSE I FOUND THE GLUTEN FREE DIET HELPED ME BUT I CONTINUED TO HAVE OTHER ISSUES. THEY CALL THIS REFRACTIVE CELIAC DISEASE,BUT I RESEARCHED AND FOUND LINKS BETWEEN CEALIAC DISEASE AND CANDIDA BECAUSE WHEN YOU IMMUNE SYSTEM IS COMPROMISED WITH CEALIAC DISEASE YOU HAVE A GOOD CHANCE OF HAVING A CANDIDA OVERGROWTH YOUR BODY CANNOT STOP HARMFULL BACTERIA MULTIPLYING .IF YOU LOOK AT THE SYMPTOMS OF CANDIDA IT IS VERY SIMILAR TO CELIAC DISEASE.
              SO I WENT ON A CANDIDA DIET AS WELL AS STAYING GLUTEN FREE AND THATS WHEN THINGS REALLY STARTED TO CHANGE,SEE CANDIDA FEEDS OFF SUGARS AND CARBOHYDRATES AND MOULDS EITHER IN FOODS OR IN THE HOUSE WHICH MEANS YOU HAVE TO GET RID OF THESE TO KILL THE CANDIDA.THE PROBLEM WITH THE MODERN GLUTEN FREE DIET IT CONTAINS A LOT OF SUGAR AND CARBOHYDRATE.YEARS AGO THE GLUTEN FREE DIET CONTAINED MAINLY NATURAL UNPROCESSED FOOD LIKE MEAT VEGETABLES FRUIT AND NUTS WHICH MEANT THE DID NOT EAT MUCH SUGAR OR CARBOHYDRATE SO REFRACTIVE CELIAC WAS NOT MUCH OF A PROBLEM THEN BUT IT IS NOW SO I BELIEVE FROM MY OWN EXPERIENCE THAT IT COULD BE CANDIDA RELATED I.E CANDIDA BROUGHT ON BY CELIAC DISEASE
              ALSO YOU MIGHT WANT TO GET A HAIR MINERAL TEST DONE BECAUSE CANDIDA CAUSES YOUR BODIES MINERAL LEVELS TO DROP WHICH WILL NOT SHOW UP IN THE BLOOD TESTS UNTIL YOUR ALMOST DEAD.THEY TEST ONLY FOR WHAT IS IN YOUR BLOOD NOT YOUR BODY STORES.ANYWAY THAT IS THE BEST THING I EVER DID IT SHOWED REALLY LOW LEVELS OF POTTASIUM SODIUM AND MAGNESIUM AS DID THE REST OF MY FAMLILY WE ALL HAD SIMILAR PROBLEMS AS THE MINERALS STARTED TO RISE ON THE CANDIDA DIET CAUSE I DID MORE HAIR TESTS TO CHECK SO DID ALL THE PROBLEMS STAR TO GO AWAY .I TO HAD ALL THE SORE CRAMPY MUSCLES NOT ANYMORE .
             SYMPTOMS THAT STOPPED WHICH IS A LOT I AM SURE YOU HAVE A VEW OF THESE:   STRANGE CRAMPING AND MUSCULAR RELATED PROBLEMS,SO MANY EYE PROBLEMS TO MANY TO COMMENT,IBS,ANAL FISSURES WHICH THE DOCTORS DONT UNDERSTAND,VERY TIRED AN WEAK,TEETH AND GUM PROBLEMS,TOENAIL FUNGUS,DERMATITIS,CARPAL TUNNEL SYNDROME,ISOMNIA,IRRITABLE ALL THE TIME,BLOATING AND GAS A LOT OF GAS,REFLUX,SENSITIVE TO LIGHT AND LOUD NOISE,FEELING SPACED OUT A LOT WEIRD FEELING ,VERY LOW BLOOD PREASURE NOT ALL THE TIME,THERE IS MORE BUT I HAVE TO STOP SOMEWHERE,EVERTHING HERE HAS BEEN DIAGNOSED  MY DOCTOR COULD NOT HELP ME WITH ANY OFF THEM .THAY ARE ALL CLEARED UP NOW,SO HOPEFULLY THIS HELPS YOU
               PS. A STRANGE THING HAPPENED MY SERVERE VARICOSE VEINS IN MY LEG HAVE ABOUT 85% CLEARED UP.MY DOCTOR IS WAS QUITE SURPRISED BY THIS MAYBE THERE NOT JUST HERIDITERY BUT A SIGN OF BAD HEALTH I AM NOT COMPLANING
              GOOD LUCK WITH YOUR HEALTH geofftennis.

Gerty

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Re: Could I have Sjogrens? Weird symptoms no doctor can explain
« Reply #20 on: August 21, 2010, 06:30:16 PM »
9) Another weird one...I have issues with striped patterns like on walls and shirts. I went into a store not too long ago and the clerk had a pin-striped shirt on and it was honestly making me dizzy looking at the shirt. It was like all the lines blended together and I could distinguish each individual line. It was very strange to say the least. I've noticed this with wall papers that have striped patterns as well.


My mum use to have big time troubles with strips and things like that I don't know if she had anything other then poor vision like a disease of the eye and sadly she is not here anymore so I can't ask her even flickering of the telly as well.

Pisces24

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Re: Could I have Sjogrens? Weird symptoms no doctor can explain
« Reply #21 on: August 22, 2010, 08:08:01 AM »
This may sound dumb but I wonder if the light rays you see have to do with the SHAPE of your eye.  ???  You don't say you wear glasses so I am inclined to point to that.

I heard a looong time ago that the cornea flattens out as we age.  Maybe there is a shape problem or somthing behind the eyes causing it?


puccini914

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Re: Could I have Sjogrens? Weird symptoms no doctor can explain
« Reply #22 on: August 22, 2010, 10:30:28 AM »
From what you mentioned it seemed like these symptoms are the beginning of something.  You, like me, are very much in tune with any changes in your body.  I noticed this illness coming on long before there was anything to detect in any tests.  Well, I was also  pregnant at the time, so there was also much to be easily blamed on pregnancy.

 I don't want to be the bearer of bad news, but I wonder if any of his could possibly migraine aura.  They can really interfere with your vision and cause a lot of light sensitivity issues.  Fluorescent lights are the worst for me, sunlight through trees might as well be a strobe light in my face.  I can't stand headlights at night, LCD lights, and a lot of the other light sensitivity issues you mentioned.  They triggered the worst migraines.

 If you end up wearing glasses full time, I would reccomend getting the works.  It's not cheap, but well worth it.  Mine have the anti-glare coating, the UV filter, no line bifocal(because I'm old), and the transition lenses.  The only problem is that my AI issues leave me very sunsensitive all over and now I no longer have my eye pain to warn me to get out of the sun.

 I even ended up up with a huge flare for being in direct sun for too long and not realizing it because of my wonderful new glasses.  Took a month, increased Methotrexate and increased prednisone to finally get to feeling a little better. 

I think if the eye docs can't find anything, then maybe the next step is to talk to your doctor about a referral to a good neurologist and a good rheumatologist if you don't already have one.

sleeeepy

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Re: Could I have Sjogrens? Weird symptoms no doctor can explain
« Reply #23 on: August 22, 2010, 01:52:25 PM »
My suggestion would be to see a neurologist for sure. Have you had an MRI of your brain and cervical spine...that would be my next step if I were you just to make sure you are all clear in those areas.

Take care.............Mary