Sjogren's Syndrome plus more...

Feel the Burn · 03-27-2010, 09:24 AM

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.

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

Vivere · 06-03-2010, 10:58 PM

Hi Fran E,
Living with any chronic illness is a daily challenge. Although I don't experience some of your symtoms, I can relate and empathize with you on MANY levels.
You are not alone : ) Since life to me is such a priceless gift, I try to live with "the cards I've been dealt." Though each day presents new obstacles & many days I just don't even want to get out of bed, somehow my faith in God propels me TO GET UP - painful as that might be.
I know it's hard to be upbeat & positive when ANYONE feels so poorly. So,
I try to smile through the tears (though not always successful), and trust God for, "Just Enough Light For The Step That I'm On!"
I've been liviing with Lupus, Sjogren's, Fibromyalgia & CFS for years. Actual diagnosis was in 1981, but I believe it went undiagnosed for years.
I combine vitamin & mineral supplementation (after thorough reasearch on interactions with meds), along with following a trusted specialists recommendations. I combine natural & synthetic means to obtain my maximum
quality of life. I believe in researching everything that may be beneficial.
Natural supplementation has helped me out tremendously. But, what's good for one person may not be good for another. Research & being active in your own personal health problems is a VERY GOOD thing!
I could go on & on, but I'll spare you! I just want to ENCOURAGE YOU to hang in there & KEEP TRYING : ) Enjoy your good days & try to pace your activities. Best of wishes to you along your journey : )

rainforest · 01-16-2011, 02:34 PM

I'm sorry to hear your situation. I was dx with sjogren's too and osteoarthritis, osteoporisis. I make sure I drink alot of water frequently, use Biotene toothpaste, mouth wash and floss.presently take plaquenil. I USE over the counter refresh eye drops and sees an ophthalmologist. I WORK fulltime and try to be active although I get tired alot. I pray to God to be well everyday. pls don't lose hope. God is watching over you/us. pls do exercise and try not to be stress. Conditon gets worst when you're stress. Laughter is the best medicine. Get 2nd opinion from another Rheumatologist. take care. I'll pray for you.

en bloc · 02-08-2011, 09:17 AM

Beenthere,

I too have been diagnosed with Sjogren's several years ago but have had medical problems for decades. **I'm just new to this forum, not new to this game

**

Are you positive for ANA and SSA or SSB?

Although I'm sero-negative, my lip biopsy was extremely positive. Most of my problems are neuro related and I just found this forum. I wonder sometimes if the Sjogren's really causes the neuro manifestations or if the neuropathy (both AN & PN) cause the sicca...and destruction of the salivary gland. Which came first, the chicken or the egg

It most certainly is NOT in your head. If you do have positive serum markers or + lip biopsy, you might inquire about taking Plaquenil. It more about treating symptomatically for each system affected.

There is much more to be learned about Sjogrens and other AI diseases. They are ALL related in some way.

Hoping you feel better.

Annie59 · 02-08-2011, 07:12 PM

Even big cities can do this tho smaller can sure be a problem. I was diagnosed with Sjogrens in 06 and in late 08 I went to Mayo clinic for testing for myasthenia gravis and the neuro sent me a RHeumy consult. It was at 5pm. I was totally brain fried and was on mestinon which makes the Sjogrens WAY better. I didnt tell her half of what I was struggling with with the Sjogrens. They did knew blood tests and asked to see my biopsy slide from the university back home. They said no you dont have it mostly based on me not telling them all the miserable stuff and their blood test. So now the university who diagnosed me except for my pulmo doesnt include it anymore in my diagnosis! Sometimes no matter where you are being treated you have to get away from the old records. I saw a hemotologist who I had to tell I was on Paxil near 10 years ago and wow did her overreact to that. He without my permission called the shrink that prescibed it and it all ended up a giant mess. He had made his mind up just from how debilited I was and the paxil that it had to be the easy choice. He was very hard to talk to as he was very foreign so alot of what I tried to tell him got lost and I feel made it seem I was a weird/difficult patient. I had a reaction to IV iron which was the first strike against me as he wanted me to get 3 treatments of that and had no understanding how I could react to it.

I know that much could be done to make medicine better but for me my worst nightmare would be to universally have all medical records available to all doctors automatically.

Annie59

SWAlexandria · 07-31-2011, 09:43 PM

I have Hashimoto's Disease and also dry eyes and can't clear the back of my throat. Endocrynologist said it sounds like Sjorgren's but I tested negative for it. However, Sjorgren's takes ON AVERAGE 6 1/2 years to diagnose. I understand that there may be a drug you can take to slow down the progression of Sjorgren's but my Rhematologist won't give it to me as I've tested negative. *edit* I've also contacted a Support Group Leader in my area to see if she might have any valuable information. *edit*

shikantaza · 08-30-2011, 10:18 PM

Hi BeenThere,

I've been there. I think you have Celiacs disease. If you have the money, I would go to one of the Celiacs centers. Doctors right now do not know much about Celiacs and it is a all encompassing disease - it isn't just my tummy hurts and I can't eat stuff with gluten, it's a great big monster of a disease. I was lucky and went to a great Mayo Clinic Endocrinologist that diagnosed.

I have all the stuff your talking about and more "Sjogren's Syndrome", epilepsy, celiacs, secondary adrenal insufficiency, dystonia (and a few others to boot). Gets you pretty sick. The Sjogren's Syndrome is just a lesser part of Celiacs disease. It's hard to find a good doc, people like us need neurologist, allergists, rhumatologists, endocrinologists and lets throw in a shrink for good measure. Be proactive and learn all you can, there are some great books.

I don't know if you can get a hold of me through here - I'm a bit hesitant to leave my email, but I sure wish I could share some of my story, trials and tribulations with you.

Hang in there. You're NOT CRAZY - you're sick.

Luvs!
Sue

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