polymorfic troubles

[Jana]

Hi I am Jana from Czech republic.
I would ask you if my symptoms can be Sjogren ?
I am now 38.  When I was 16 I had a bladder infection.  Since that I have been suffering from a little pain in my left back, elevated fatique and more frequent pissing.  But doctors didn?t find enything wrong with my kidneys or something. And my life went on without any other issues.
But last year in september, I suddenly got feeling of depersonalisation, and my memory and concentration went really worse.  Also my sigh went a little worse. I am always tired and also I have an incredible tinnitus. I have dry eyes, but I don?t have problems with swallowing. Occasionally I have cold hands, huckle pain, face edema, flatulency, dry skin, losing hair...etc.
My blood test (including sugar, thyroid) was OK.  I was positive for borreliosis, I got antibiotics Doxy for 20 days, but it didn?t help at all.
I was also on MR of brain, but nothing wrong was found.
So what is happening ? I feel like 75 years old with Allzheimer. I don?t thing it is lyme, I have never had a buttonholer. No rush, no high fever. I will see an immunologist this month...but anyway I would like to know your oppinion. Thanks

[wendyoh]

I get bad brain fog and pain and sometime tinnitus--usually more likely to get ear ringing if try medication. did you test the antibodies for sjogrens? altho you don't need those have SJS. Good luck, I know it can be hard to sort out.

[irish]

It would be wise to relax and sort of try to figure out what issues are bothering you the most. This way you will have the main issues figured out when you see the immunologist. Sometimes it also helps to just write down a list of the problems you have had with the approximate date or year when it occurred. This way you don't have to sit and tell him everything that you have had.

It is much easier for them to deal with the primary problems and then when they have time and quiet they look through the list and can think better. We people with chronic illness can overwhelm the doctors. I hope you have good luck with this doctor. Irish

[Jana]

thank you for reply.....I haven?t been tested for Sjogren yet....as I wrote, I will see an immunologist this month....it is really hard to live with so many troubles and doctors are hopeless   good luck to all

[Jana]

Hi all, so today I got my results from an immunologist.  Everything turns out negative (ANA antibodies negative, CRP negative, all immunoglobulines negative), so probably I have no Sjogren, but maybe lyme disease ?  But I have never had a tick.  I got Doxy ATB for 20 days, but i did not help at all.  I am affraid of neurodegenerative disease too, but brain MRI was also negative. So I am confused what is going on...   good luck to all.

[eye2dry]

Hi. Jana.

Did they give you anymore ideas on where to go from here?
Are they aware that you do not have to have positive blood work to have sjogrens?

You are from another country so I am not sure what their ideas are on autoimmune disease


shelly

[Jana]

Hi Eye2Dry - in Czech Republic there is a problem to find a good immunologist or a specialist for infectious diseases. If your tests are negative, they will send you back to GP without any other advices.  Lot of cases are closed as CFS without any treatment.  So people sometimes have to pay a private physician, which means long waiting time and lot of money spend.

[Pepita933]

My son is a quadriplegic.  When I started anticipating troubles, trying to figure out what was wrong, he said "Mom I learned after all that has happened to me, not to anticipate.  Live with what you have now." 

The wealth of information out there on the internet is overwhelming.  It is so easy to look for answers and come up with a major case of fear and anxiety.  That doesn't mean you shouldn't be looking for answers, just don't fear what could be true.

[Jana]

Pepita933: you are right, but...I am dying of fatique, but all my examinations were negative. WTF ?  No matter if I die tommorow, I just want to know what is happening in my body. It is strange, you can get a cure for cancer, you can get almoust any part of your body transplanted...but there are still many failures in diagnosing autoimmune or infectious diseases. 

[irish]

The reason the testing and doctors diagnosis are so slow coming is because they don't know that much about the autoimmume diseases yet. Autoimmune diseases have not been on the radar all that long. I have myasthenia gravis and this disease was ust identified in the early 50's and I was showing symptoms in 1964 and over the years I questioned whether I had this. I was poo--pooed by doctors when I suggested this but I had taken care of people with myasthenia when I was in nurses training. It took until 2006 before I was diagnosed and I had to fight for it all the way.

Lupus has been known about for 50 years or more but it has taken a long time to figure this disease out and I would bet they are not through learning about it. We are in the early stages of research on autoimmune diseases. I have been on this site since around 2005 or so and back then doctors were seldom prescribing Plaquenil for Sjogrens. Now it is the desired drug to start with...but many doctors are still dragging their heels.

Sjogrens has a bad wrap because of poor circulation of information when it comes to educating the medical community. I asked a doc once how much time they spent on Sjogrens in the family medicine program and doc said 5 minutes. I told him he best be studying up cause you are going to see a lot of it. All I can say is to gird yourself for a wait when it comes for diagnosis as some people take longer than others. Good luck. Irish

[Jana]

Iris, you are right.....GPs often know nothing about autoimunne diseases....but medicians are not always to blame....when your tests are negative, medicians can?t give you any medication...I personally believe that  autoimmune diseases are caused by infection (borrelia, chlamydia..etc)

[irish]

The feeling now is that many cases of autoimmune disease are caused by infections and this can be infections that are not even that severe. The feeling is that the stress of the infection and the infection itself trigger the response of the immune system going out of whack and trying to kill off our healthy cells.

My symptoms started right after I had a traumatic head injury and for years I was having all this stuff going on but took around 35 years to get a diagnosis for Sjogrens and then 3 more years to be 3 more diseases diagnosed. Life is interesting. Irish

[Jana]

Well, I thought that just doctors in Czech Republic were backward  ....now I see that this is world-wide problem  .  35 years to get a diagnosis   That is sad   I have been struggling just about for 7 months and I am desperate   I am still not sure what causes my fatique.  Sjogren ? but ANA test was negative.  Lyme ? - I have never had a tick, and I did?t get better after Doxy treatment.  I will have to start another circle of examinations