How many times can I take hearing it?

[Fluffysmom]

I just got back from seeing my neuro-ophthalmologist.  All my tests are within normal range.  He said that he is happy to report that there is no evidence of demylenating disease. I said "Tell that to the rest of my body" after he had been too chipper and dismissive of the possibility of Sjogren's.  He did then later amend the "no evidence" statement to just in my vision, optic nerves, etc.

I asked specific questions, and he said that he didn't have the answers, that I should go back to my PCP.  ARGGHHHH!  He is a very nice man, but I have just heard that too many times!  

I asked if he could suggest a really good rheumatologist (he did think it was a good idea that I see one), but he said that he was new here so it would be best to ask my PCP.  I told him that the one she had referred me to was a bad experience, and that I had met someone with a very similar experience with the same guy.

He wished me luck, agreed that some of my symptoms pointed to a MS-like disorder, but there was no evidence that he could see.  He did tell me to call Dr. Y. (ms neuro) if my jaw pain isn't dental.

I had high hopes that this guy would help point me to a diagnosis of some sort, but he kind of let go when he saw my SSA and SSB results, though agreeing that there are a number of seronegative Sjogren's patients.

I got nice advice on treating my dry eyes, and a "give me or one of us a call if you get new, worse symptoms", and advice to follow up with my regular eye doctor.

Sigh.

Must pick my self up, dust myself off, and keep on searching for answers.

Kathy

[Fluffysmom]

OK, I was going to drive over to Whole Foods and pick up some gel-caps of D3, and I wake up to sleet ticking against the bedroom window!  

Apparently the forecast has changed; it's not going to be a little snow around 9 that melts off by noon; there may be some freezing rain, more sleet; fun stuff.  I can always get the D3 tomorrow, or later today when this stuff melts off.  

Good thing my dentist's appointment is at 6 pm.

Kathy

[Quixotic1]

My neuro started me on 2000 IU.  He's not a huge believer, but he respects the guy at OHSU so that's what he tells all of his patients to take.  I am on 4,000IU a day.

Q

[Fluffysmom]

Thank you, my friend; I will continue to look for answers until I have some!

I'm taking 1000 units a day, and I'm still taking the first bottle I bought of dry Vitamin D; haven't gotten around to going and buying that D3 that you suggested; I'll have to look back and find the brand that you suggested.  Maybe it will work better than this dry stuff.

My PCP wanted me to try the 1000 units a day, and will recheck my levels on February 4 when I have my next appointment with her.  I think I'll have her check my ferritin levels, too, since we haven't for a while, and mine was really low for a while until I'd taken supplements for a few months.

I plan on taking the time tomorrow to learn how to hook up the digital camera to the computer with a USB cord and loading the Maui pictures so I can post some really good ones.  You've been in my thoughts; I took you to Maui with me, you know!

Be well,

Kathy

[monotreme]

I am very saddened by the constant ups and downs you experience with the doctors Kathy.  You know your body isn't normal, yet get no help in finding a diagnosis.  I am sorry.  I have been there with Craig and know all too well how you must feel.  Just know that I will pray for you and hope that you continue to look for answers and find them.

By the way, since I am on a vitamin D3 kick, how many units a day are you taking??  I have a friend whose brother has MS, and the doctors would not let him take any supplements.  He had to stop working from horrible fatigue.  Anyway, I have asked him for the past six months to take D3.  He started at 1,000 units a day and is already feeling better.  He is able to go longer before needing a nap.  Now I am working on convincing him to take 2,000 units a day!!!!    So how many units are you on?

Take care Kathy.,  Thinking of you.
Elaine

[singinalong]

I just wanted to let you know, that I can relate. I went to see the opthomoligst, today, AGAIN, after he so kindly phoned me to see how I was. Told me to come in, cause we were gonna solve this today... and he again, told me nothing I hadnt heard before. Rumbling around the diagnosis of MS, ...oh it could be... It looks like that... blah blah blah, and then said nothing looks out of the ordinary.... Your eyes look healthy... I agree with Quix, its not cool when they make statements about diagnosis, and then they say they dont know about them much... but they throw it in there anyways. ..

Sending hugs --
Shari

[Fluffysmom]

I made a choice to change my mood, 'cause I didn't want to waste my Provigil. :o)  Because of the increased mental focus, I was able to get up and get moving.

And getting my list of things done really did make me feel better!  By the time I was chatting with my friend/catsitter, I was laughing and enjoying the beautiful day.

I'll keep going on my quest to find the right doc and some answers.  My body speaks quite eloquently, and it is requesting attention.

Kathy

[Quixotic1]

as usual I hit Send before I'm ready.

Provigil will not raise a low mood.  It just provides some mental focus and energy.  It seems like it affects depression, because we feel so much better when we can manage to do things.

Q

[Quixotic1]

I'm sorry this guy wouldn't play ball.  I'm very disappointed in him for making statements about a possible diagnosis when he readily admits he doesn't know much about either of the disorders.  That's show poor intellectual integrity.

You can take it as often as need be, though I know how low you can get.  I swore off all doctors for about 6 months until one day I couldn't lift my right arm.  Even then I didn't see anyone for another 4 months or so.

I know how you feel.  But, we have to listen to our bodies.  They tell the truth.

Hang in there.

Quix

[Sunnytoday]

I just wanted you to know I read this and cared. I don't feel i have much more in me that to say that.
((((((hugs))))))))
~Sunnytoday~

[Fluffysmom]

Hey there, my friends, I've pulled myself (most of the way) out of my numbing disappointment with yet another doctor that I thought might help me find answers.

I'm truly glad that my vision issues aren't something that is obvious and truly awful, like RP or macular degeneration or whatever.  I can see well enough to enjoy the sunny, cool, crisp day, to drive my cute little car when I need to, and especially, well enough to read.

I still wish, of course, that he could have helped me at least head for a partial diagnosis.  I'll never get my insurance to pay for Provigil with no real diagnosis.  I was worried about trying Ritalin because it might raise my BP and heart rate, and then my tremors started kicking up a little more, and I started wondering if Ritalin or whatever would make my tremors worse.  Provigil really doesn't.

I took a whole Provigil today, and when I was feeling low today after my appt., I thought "what a waste of $10!"  Then I decided I couldn't waste money, so I went and picked up the capsules for Fluffys meds from one pharmacy, my Rxs from another, and my allergy syringes from my ENTs office.

I bought some Flaxseed Oil capsules that the neuro-optha suggested might help with my dry eye symptoms, had my pharmacist orders some moisturizer for another area (product called Replens, for women with vaginal dryness), confirmed my appt. with my dentist for tomorrow evening, and called and chatted with my friend/catsitter.  

I'm home doing laundry, and I'm going to try a warm-washcloth eye compress.  Then I'm going to do some more research on Sjogren's and Trigeminal Neuralgia so I'll have information at hand if my dentist needs it.  I know dentists can do some of the further testing for Sjogren's, but then it wouldn't be covered by insurance.  She can just maybe help point me in the right direction.

In between all this, I'm going to do my new "finding answers" dance, and hope and pray  that you, Wobbly, get some better answers on Wednesday.  We all have each other, but we need to be able to do some Happy Dances, too!

Hugs,

Kathy

[sllowe]

Oh Kath,

I had wished for some answers.

Don't neuro's treat more than demyelinating disorders??? Oh yea they do....durrnit!

I'm sorry Kath.

(((hugs)))
Shell

[Wobbly]

Oh no your got that answer again, sorry your still dancing around with us here in Limboland... I have a strange feeling that I'll hear the same type of answer this Wed from the MS specialist I'm seeing...

so maybe I should get my feet warmed up to it...that way I can join in with you...hang in there girl and just keep on going... it does take along time to figure things out doesn't it.  

I wish that all of us here could have the answers NOW... but, that's not going to happen.. we are here for each other... and that I'm glad for.
take care hon
wobbly
undx

[Fluffysmom]

Oh, you do know the words and steps very well, don't you!

Maybe we should take our tired limbo legs and do some Native American dance for clear answers.  Anybody know if there is such a dance?  :o)  

Thanks for the hugs, they are very comforting.  

Sending some hugs back to you,

Kathy

[slightlybroken]

So sorry. Sounds like your doing the limboland dance....You think your getting somewhere....Then the doctor gives ya the same song and dance routine..(frankly I've heard it...I know the words...I know the steps...I don't want to hear it AGAIN!)..then ya get knocked on your bum bum and you have to dust yourself off and try, try, again...starting the dance all over again when you think your at the end. Frankly ...my legs are getting tired.

Trust me...I feel for you. I'm sending you lots of cyber HUGS your way.