Quote:
Originally Posted by cyclelops
I am going to bring this thread back to the foreground again. I have been in another forum for Sjogren's and I want to make things clear.
There is Sicca and Sjogren's.
Many, many drugs cause sicca. Dry mouth, dry eyes.
Among them are antidepressants, all of them. Benzodiazepines (during withdrawal too) , z drugs, antiparkinsonian drugs, diuretics, opiates.
If you are on these drugs, have negative blood work such as a normal ANA, normal ENA, and a lip biopsy is negative...look at the drugs. They should look at drugs FIRST before they do tests. It is easier to go off these drugs and see if things improve, than to go thru all that testing and have it come back negative.
Not all sicca is Sjogren's. Not all Sicca is inflammatory. Not all fatigue is autoimmune.
Many diseases come with sicca because sicca can be neurological as well as inflammatory.
When people seek to label their sicca as Sjogren's they do themselves a disfavor. They may not find out what the cause of the sicca is. I would hate to mistake SjS for amyloidosis!
I know what it is like to be anxious for a diagnosis, but, to be accurate, is what is most important.
Sicca is NOT Sjogren's. Primary SjS is worse than secondary SjS and the term secondary SjS should be dropped unless the blood work is +, because, all autoimmune disease can produce Sicca. Sicca is part of RA, Lupus etc. People with autoimmune disease already have the aching, the fatigue etc that come with any AI disease.
Primary SjS can make people very, very sick. Sicca is uncomfortable but not life threatening. Primary SjS can be.
Rheumatology needs to decide what is what....they have tried to classify autoimmune disease by the ENA, when it should simply be the ANA being +. They need to realize that many of the ENA do not define the disease. Only a certain percentage of people have the 'correct' antibody for their disease. However, at least elevated ANA, low complements, high sed rates, high CRP, thrombocytosis indicates inflammation. Without these markers, it is hard to assign sicca to an inflammatory cause.
Lip biopsies can show inflammation but it is not always SjS.
SjS diagnosis is a mess.
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When I was discharged from teh hospital on Dec 30/09,, the Neuros that were attending to me said in there rellease narative,, that I had in the past been treated with ECT and also lithium,, now the lithium was dsomething that was treid back in 1986 when I had a severe anxiety problem,, but teh ECT,, I only agreed with that when I was admitted to the hospital back in 07 for severe numbness and burning throughout the body,, when EMG studies were conducted,, blood test run,, and everything came back normal,, I was approached in my room by the hospital shrink,, and was told that since nothing couold be found,, that iwas definately a somotaform disorder,, they asked me to stay in the psych ward,, at that time I said to my wife,, if theres a chance that I might be getting more medical trwatment,, then i will do it,, big mistake,, they tried to med me to zombie level,, then about the 4th day there,, they approached me about ECT,, me being naieve thought maybe in my head there is something worng,, so like a fool I had it done,, 5 times,, the last time after my release,, it was horrible,, left me feeling numb and lost to the world,, I try to forget about that,, but the problems continued,,
I went downhill from teh neuropathy,, I was getting sicker and sicker,, til we finnaly met a good neuro,, and a good rheummy,, who did the right testing and found the Sjogrens,, and also the SFN,,
NEVER go to a small town hospital that NEVER sees autoimmubne disease,, these people are absoulately worthless,, they might be good for stopping nose bleeds,, and treating below level 1 problems,, but drive yourself to the bigger cities to get the help you need,, you will get jerked around by GP;s,, you will get jerked around by local Neuros who deal with stroke victims,, but have little to no experience in AI Neuro problems,, or Neuro problems in general,, just remember one hting,, all doctors are called doctors,, regardless if they graduated at the top of there class or at the bottm,, choose wisely folks,, do not assume that since the guy or woman is wearing a white coat they kow anything