Went to a rhuemy and got a good laugh

[baddabingtim]

I went yesterday for the first time to a rhuematologist. Guy was from Israel - hysterical fellow - anyway I told him about dry eyes and dry mouth - I had negative ANA and negative lip biopsy - he basically said I will order some more blood tests - but at the end of the day - what difference did it make - you may be suffering from an idiosyncrasy - not sjogrens but something we cannot figure out - regardless the treatment
options are the same - take some evoxac and call me in the morning....

I did go to get lab work done for my own sanity.....

He also suggested I cut out the klonopin - which I said I only take .5mg at night - so I guess I will wean off this...

[Scottietottie]

Hi 

I know for your own sanity you want a definitive answer but thank goodness he's prepared to look at the treatment options regardless. If he seems an open minded kind of rheumy you could always print off some of the info about people with SjS and negative 'bloods'. Ask his opinion if nothing else.

Take care - Scottie 

[Chickpea]

Good to hear he was a 'funny' guy but at least he had the sense and honesty to admit that there are things that doctors don't know.  How rare is that?! 

You're definitely suffering from something, it's just that the medical profession hasn't caught up with it yet.  They should treat the symptoms ... it's not rocket science!

Hope all goes well - Chickpea

[eyeamdry]

He also suggested I cut out the klonopin - which I said I only take .5mg at night - so I guess I will wean off this...

Why did he suggest this?  I'm assuming it's helping you get to sleep at night.  Is it causing you problems?

[baddabingtim]

I been on klonopin for a few years - I try to take minimal dose - I am prescribed 1.5 mg a day - but only take .5 mg at night before bed - last night I took .25 - I will slowly try weaning off it - I really don't think its causing my dry mouth - but the only way I guess to rule it out is to try a few months without it - now if I cannot sleep well enough without it, I guess I will go back to the .5mg - Sleep these days is the most important thing

[eyeamdry]

My hubby takes Klonopin for jerky legs at night.  He has taken it for years, just before bed and he's dead on the pillow with or without the pill.  It does wonders for his restless legs.  Lucy

[irish]

Hi! Sounds like you have a doc that knows what is going on. I would bet that he will be able to help you with your symptom control or know who to refer you to. I also think he may want you off the klonopin if you are taking it for "sleep". Klonopin is generally hard to get off of and needs to be tapered slowly. You may have to cut it in 1/4 tabs and do it one month at a time. I had a friend who was on this drug and had a terrible time getting off and had to cut the tab into such small doses and taper so slowly. Takes patience to get off and you may want to go see the GP and get on the low dose antidepressant prior to getting off the klonopin completely. That way you won't have many sleepless nights. Just my humble opinion.

You may want to ask your GP for something for sleep that you can take long term. Klonopin is really good for the leg cramps for many people but for those of us who have the sleep issues a low dose antidepressant works quite well. Just be aware that amitriptyline works very well for sleep and is given also for nerve pain, legs, feet, etc. However, the amitriptyline is quite drying. I have since read that nortriptiline (same family of drug) works well but is not as drying. Good luck. Irish