Lots of pain and feeling down

[allium]

 Hi everyone.  You were so generous with your responses last week; I've had major computer problems come up, and have been offline and or too tired until recently.  I'm really sorry to take this long to thank all of you! 

Since I posted, I have seen the rheumy, the eye doc, and my GP, all with lots of complex, frustrating, and depressing results.  I'm afraid my pain level hasn't gotten any better, and I'm pretty beat after a long stretch here, so I'm going to have to get into all of this in stages.

An interesting tidbit from the opthamologist I've been seeing for nearly two years with suspicion of glaucoma.  All of this time, I've been told my eye pain and irritation was from "allergies", being stressed, too much eye strain.  One of the tests ordered by the rheun was the stain test, and I was rather positive on my lower corneas.  I realized that they had done this same test a number of times before, and I had been positive EVERY TIME before, but she never once told me that my eyes were dry.  Just do a lid scrub, use drops.

What a moron, she is so fired.  This could have been started to get worked on two years ago.

The Shrimer's was 13 and 18, if that means much.  I think the resident doing the test didn't quite know how to read the results.  The tear break up time wasn't done; they didn't know what that was.

This is a large medical institute associated with the teaching hospital!

So much for eyes.  She did say I could be put on Restatis, but didn't think plugs were a good idea.

Anyway, I hope I'll get to sleep tonight, with a prescription for Ambian.  I wake up every hour or so in pain.

You're all great!
Sheila

[JannaLee]

Sheila,

I join in your frustration with the eye doc!  There is NOTHING more upsetting than finding treatment could/should have been started sooner!

When you consider THE ONLY THING THEY DO ALL DAY, EVERYDAY is evaluate eye health and prescribe eye care.....it is astounding this was ignored!

I mean THIS IS THE ONLY THING THEY DO!!!  We pay a premium for such practiced and specialized care!  We pay a premium for the test results that were ignored!  Why the heck did the test get ordered if it wasn't going to be used as a palliative consideration!

Sorry for the 'scream typing' this kind of thing really gets under my skin.

Janna

[Scottietottie]

Hi Sheila 

I'm sorry you're having such a frustrating time of it - and so painful. I'm not medical, so could well be wrong, but it sounds like you may have corneal abrasions and Restasis will help with those. It may well sting - and take time - but persevere.

I'm not surprised they haven't advised plugs at this point. I was referred to an optho because I wanted to ask about them but my eyes aren't deemed dry enough for them and mine are now about 19 and 6 on the Schirmer test. Below 10 is considered dry on the scale my tester was working to. First Schirmer I had before Plaquenil my eyes were 10 and 3 - so the Plaq and fishoil seem to have helped. They still sting though and I don't cry.

I hope they address the pain issues. It's hard not to get really down if you're in constant pain.

Take care - Scottie 

[Epson]

Sheila,

We are in the same boat, I had MRI of my back and brain, nothing.  I mean there was a brain but nothing unusual.  Had an EEG two days ago and it showed nothing, so why to I have this unconnected feeling from my body and get lost 2 blocks from my house.

I must be going crazy   If it weren't for the tumor in my bladder I would be concerned about it, but I have moved it to the back burner for now.  Let us know if they figure out anything.

As far as doctors prescribing narcotics, I think it is horrible, but if you could send me the name and phone number I would appreciate it.  Every doctor I see wants to put me on antidepressants instead of trying to find out what the problem is. I guess if you can't find out what is wrong, why not try to cover it up

[allium]

I am astounded... I am really PO'd too.  The irony that there is another doctor on this same group who has done and published past studies about eye issues and Sjogren's. She at least could have tried to look past the (wrong) aspect of glaucoma and started sorting out what was really going on here. I thought I was in trouble when this one told me in my previous appt. that autoimmune diseases don't cause eye problems, and that my one eye being more painful and irritated than the other was due to an ALLERGY (in ONE eye).

I am considering seeing this other doctor I mentioned who perhaps might know what to do with dry eyes, whatever the cause.  Thanks for the info about the plugs, Scottie.  I guess as dry eyes go, I am not that bad at this point.  I don't know if they did this test right.

Ah, here we go round the 'ology bush, the 'ology bush, the......

The rheum visit I just can't get into right now with all the details, except still sero neg on everything (including RA), and my neuro symptoms are so "rare" for Sjogren's.  Salivary scan tommorrow.

The neuro is tommorrow also.  I have been tentatively told that there apparently no "MS" lesions in my brain (other spots tho) and C-spine, but I have a LOT of osteoarthritis in my neck, and disc degeneration.  Other spinal and foot x-rays show it is also there as well, with misaligned vertebrae in my lumbar region.  I'm 49 years old, and I can't understand how this could have happened so quickly. According to them, it's not AK, or RA. 

So, yeah, pain.  And the rheum says Fibromyalgia, which I'm not so sure about.

Perhaps the only minor positive is that my GP did give the Ambian and Vicoden prescriptions.  I do think she's pretty limited in the range of knowledge, but she has always listened when I have said I'm in pain. I'm now supposed to start taking 300 mg of Neurotion every night for a week, then build my dose to see any effect.  I do know that it didn't help me sleep.  I read scary things about this drug. My anti inflammatory doses are getting higher, and I know it can eventaully do in your stomach.

Epson, I read about your recent diagnosis and I really am hoping the best for you regarding this. I hope that seeing a different group of specialists might get to to a better level of care with all other problems too; esp being treated with believability.  I've had sarcoma, and the care level is a whole other ballgame compared to the three ring circus that I've had recently.

You are right in that we share some of these neurological symptoms.  I also read that you were experiencing taste dysfunction.  I now am going that path, all starting only a couple of weeks ago.  Is it Sjogren's, cranial neuropathy, MS...I don't know. It's really devastating me...I love the sensory experience of food, and love to cook.  It seems that it is also my sour taste that is affected too, as well as diminished overall.

Well, hope I have good news tommorrow; neuro will say cure is only achieved with trip to Hawaii!