punctal plugs & too many tears

[hoping]

Thanks for all your replies.  My burning is nonstop and totally interferes with everything.  Ice packs all nite long, no sleep.  Going to neuro again today.  I want to throw in the towel the pain is so bad, now into my face, numb too.

Dissovable plug sounds like a great idea because the tears are too much.

Anyone have any luck getting a neuro to try anything on bad neuropathy?  IVIG has helped in past, maybe Cytoxan?  But without a positive EMG they look the other way.  The rheumy I don't think will branch out and try much else either.  Does getting an immunologist involved help?  Never been to one.

I will try to get into see Birnbaum at JH, but will they then listen to his recommendations?

Sick to death of this disease,
Karin

[kindandcaring]

Karin

I will you to get a particular specialist who will be open to options for you..and hope one of them will roll up their sleeves and help more...hope you have appointments soon so you can bring this up with them.


Sue
I have antibodies destroying my parietal cells (stomach lining) so if I dont supplement I start to suffer symptoms of PA...I take sublingual up to 5000mcg and so far have avoided the intramuscular jections.

However these neuro symtpoms I have are not PA...ans are not in my mind..(thanks doc lol)...will see how the ALA goes over the next few days

All my best
Karin
Sue

[gurs]

my eye doc is highly against having all 4 ducts plugged. I did try it, and it was terrible. I had more eye infections than ever, and it was
miserable..hot, teary stuff running down my face all the time. I left two lower plugs in and that worked much better. Infections cleared right away.

[Rhonda]

I had the temporary plugs put in today and so far, my eyes feel better, but I have NO tearing.  Should I?  My Shirmer test was 0 in one eye and 0.1 in the other eye. 

Also- I see you guys talking about Flaxseed oil and Fish oil?  for SJS.  Does this help- if so how much are you taking?

I just started my Plaquenil today too...even though I have Macular Degeneration in the left eye. Seeing the Retina Specialist June 4th- but Opthalmologist said to go ahead and start the Plaquenil - that they would probably need to see me more often though. 

Just having too much "fun" with my SJS "friend"!   

[TerriJ]

That is an interesting approach to trying the temporary plugs in the upper ducts.  They put the temporary plugs in my lower ducts just to see if it would help and if I could handle them.  I did fine, so they put the permanent ones in.

As far as neurological issues go, the neurologists I saw said since they couldn't see anything in testing that the only thing they would do for me is symptom relief with Neurontin.  I chose not to take it.  I worry about the neurological symptoms and what is happening to me or if damage is taking place.  Things sort of change from day to day though.  Pain in my neck, tingling and fibrations, occasionalweird startle response, teeth feel numb, ears ring and burn, fasciculations sometimes.  Where does it stop???  The neuro just sent me back to my reumy with no further follow up.  The ENT I'm seeing I think is wondering about some of my other issues.  I'm tired of worrying and tired of all of it really.

Terri

[kindandcaring]

Terri

Im with you..! all these speciailists yet all seemingly clueless...yet we knowits not in our heads..we are stuck with the situation with having to just have put up with it...

Diagnostics has a long a way to go IMHO

[hoping]

Terri,

I'm with you also. 

The  burning is almost intolerable.  It is everywhere.  Plus my butt is always clenched up & in pain.  I have a major spasticity problem which is usually controlled with a Baclofen implanted pump, but it doesn't help completely.  So dang fatigued and taking way too many meds which make me more tired, but in too much pain to rest. 

Neuro felt like burning was a sjogren's flare, did not even evaluate/examine me.  Rheumy disagreed and felt burning was just something I needed to live with, part of my 'um history'.  Have gotten all the notes gathered for Birnbaum.  They all point to me as just some hysterical, psychosomatic.  I've gotten no where accept convincing them that I have Sjs.  Once I see Birnbaum, will they believe me?  I am searching out docs from Kansas Univ. Hosp. Both rheumy and neuro that could maybe work together and not be intimidated by advice from JH.  However, this whole thread of 'functional component' began with a specialist at KU, so I'm leery about even bothering.  Thinking they are the only place that would treat a disease more aggressively, then again maybe not.  Why is it so blasted hard to get decent healthcare, even in a major city??

Hoping for relief soon, because this is bad.  Still have all 4 plugs in and tearing is non-stop.  Will go again and ask about temporary plugs, unless Plaquinel and Imuran have kicked in and helped and I can get by with lower plugs only.  Such a guessing game.

The bladder pain is once again rearing its ugly head.  Does anyone else suffer from interstitial cystitis?  I am wondering if this is what I have.  If so I'd like to talk with you about it.

Karin

[Chickpea]

Hi Karin

Sorry to hear things are so tough.  I think your cry from the heart - why is it so hard to get decent healthcare? - echoed round the world!  Doctors have lots of 'toys' to play with but once they've got the MRI results, or whatever latest 'toy' they've used, they don't seem to be able to take a really good look at the person. 

There have been some good posts here recently about cystitis.  It seems to be one of those things that most of us have had at some time, but that becomes a major issue for others.  Do you think the cystitis is part of the cns issues you have?  Katybarstool has had surgery recently but I'm sure she'll have helpful things to say when she's back on the boards.  Others have had positive results with things like cranberry juice; some people find antibiotics used carefully can sort the problem out. 

Take care - Chickpea

[TerriJ]

Chickpea - you mentioned cranberry juice for the urinary issue.  Something that works fairly and you don't have to drink so much juice is cranberry pills.  I get them at the health food store.  You should drink lots of water though, so maybe the juice is just as good? 

Terri