Bad news from scan-

[ktfabian]

Sheila-

First, I'm so very sorry to hear of all you've been through and are going through now.  Someone mentioned writing letters to the doctors that didn't pay attention?  I've done that.  Haven't mailed many of them, but just the process of writing them and getting the anger and frustration out my head and on to paper was a real help to me.

As for the MRI of the brain, I've had at least two that I can remember (I'm the MRI Queen, have had to many to count and probably glow in the dark!).  I absolutely agree with Irish, I use the deep breathing I learned in Lamaze classes to help relax myself.  Some MRI places will let you bring a CD of your own if you have a particular type of music that relaxes you.  And make sure you take someone to drive if you're going to take the Ativan.  Even if you don't think you'll fall asleep, after the scan is over, you may finally relax and be a bit drowsy on the ride home.

I've been very fortunate that nothing has ever shown on the MRI's of my brain - they were looking for signs of MS in one, and I'd been in a bad car accident and had sever post concussion syndrome for the other. I'll be praying that your scans show nothing that can't be fixed,
Tracy

[peacefulstorm]

Oh Shelia, I am so sorry for your recent dx.. I cant imagine what must be going though your mind! Please know that we all care here and keep updated as you know things.  I wished I had some grand words of wisdom the best thing I can think of is...It never gets easy, just gets easier.  Much love, Cortnee'

[Chana M]

Dearest Sheila

You really are having a tough time at the moment.  The parotid pain and the rash don't sound like much fun.  And I can well understand your nerves about having another MRI.  But ... you are really well prepared this time, you've got (more than enough) Ativan, and you've got all of us.

As always, Irish has such practical suggestions.  I also keep my eyes tightly closed when I have an MRI - I don't even really like looking at the machine.  Definitely don't open your eyes once you're in there.  Music, radio, breathing, reciting poetry - all help.  But you also need what I call 'panic busters'.  As soon as your breathing starts to get a little rapid or your thoughts turn to sad places, you need to have a couple of things ready which you can rely on.  In my experience it's never the obvious things: sometimes recipes come to mind, or redecorating a room, or childhood songs.  In my case it was Christmas carols which considering it was June - and I'm Jewish - was a bit of a surprise!

Take your time getting comfortable in there.  As Irish says, you need support under your knees.  Maybe you could tell them about specific places you need support - back and neck - and make sure you keep warm too.

This is all happening fast now - MRI Sunday and Dr on Monday - which considering they've not taken you seriously for so long must feel strange.  You're entitled to be worried about the inflammation/tumor issue, but at least now you're beginning to get some answers.

I'll be thinking about you tomorrow and Monday.  Let us know how it all goes.

[allium]

Chana, the suggestions about the songs.....

Now I'm afraid since it's February, and I'm not Jewish, they are going to shoot me into the thing and all my brain will be able to squeeze out is:

"Dreidel, dreidel, dreidel, la la la la la......"

For an hour and a half. 

Well, thanks a lot! 

to Chana.

Actually, your suggestions and Irish's too are terrific.  Recipes, good.  I start running through Beatles songs; titles, album order, lyrics.  I can move on to Zep... Football players, other intellectual tidbits obviously.

They said that they will be scanning my optic nerve at some point, so I'm not supposed to move my eyes even for a time.  Unfortunately, I think no music will be offered, because I need headphones, and this is strictly of my head.  Earplugs I hope.

I hope the rash isn't the Ativan, but I have to take it.  I've had some mean right kidney pain today, and I wondering if the contrast dye will make that worse.  See what they say tommorrow.

Cortnee and Tracy, you are sweet; thanks for your support.

Will keep you posted.
Sheila

[wednesday mc haggis]

shiela

cant add to what everyone has said, but i can add your in my thoughts ,  were all thinking of you, hope to see you in chat on wednesday likely i ll be still trying to figure out how to work the darn thing, take care and brightest blessings

T x

[allium]

Hi again.

I'm going to make this a short post, because I am quite upset.  So far I've managed to avoid a major depression from starting through all this, even though I've been hammering away at this only to be invalidated time and again by doctors, others, even my husband.  The only people who have given me 100% support are here at Sjogren's World.

My MRI on Sunday went fine.  I might have taken too much Ativan, because I might have even fallen asleep a couple of times.  Time of test: 1hr, 35 min. 

I waited nearly three hours past my appointment time to see the neuro who ordered the test, getting a quick 5 min. in between with a office assistant (not a medical person).  Finally, the assistant, doctor, a trainee,  and my husband and myself get around to talking about the test.  He said, well, the tests show nothing as far as sarc granulomas, tumors, or other lesions in my brain or face (except the previous brain lesions, still there). 

Then this starts.  "I feel you have some strong emotions.  Are you an anxious person, worried about things?"  I thought , oh boy, here we go again.  The last time I was assessed by this same "assistant" (who I think has a marketing degree from the local junior colledge) I had a doctor visit filled with the same horse crap; compulsive (my symptom list), paranoid (stated I was hoping to finally get some answers and was frustrated by the previous course), post traumatic stress syndrome ?, blah blah.  Oh, lest I forget the best statement of all; I had "too many symptoms" to have anything "real".  No kidding.  This pearl of wisdom was repeated again at the latest visit.

I just could not believe this.  I told him if I was somewhat upset, it was because I has losing feeling in my hands, arm, feet, and face, losing my hearing, sense of taste, and my memory, not to mention the constant pain and painful dry eyes and mouth.  I said, these things are disturbing but not crippling enough emotionally to stop me from trying to function normally and try to work on figuring out what an answer could be. There was certainly was no period or incident that brought on these symptoms, if you are saying it's just stress.   Response: Oh, all your tests show nothing, so it's likely all emotional, maybe we should put you on Valium.  HE asked my husband what do you think about that.  The man I've lived with for 30 years said, "Oh, we could try that".     Didn't  attempt to validate or support me at all.
I was devastated by that.

This doctor seems to have zero memory of any patient history and relies completely on "assistant" workups each time for giving out diagnostic advice.  I'm not even sure this is legal.  He has a god like status in the medical community here because he does "complex" cases, but he's clearly overloaded , maybe even senile, if he cannot competently assess patients without such heavy support from others.  Too bad for the patient that the others aren't competent either.

He said that they would do another blood test for pneumonia type viruses in the blood, that can cause neuro sympt. (two years ago?).  And, find somebody to biopsy one of the rash lesions, some of which have grown quite large and crusted over.  I'm sure by the time someone reminds him enough times to do that, the rash will be gone.

So, maybe not sarcoid.  Maybe not Sjogren's, but maybe so.  Limboland again, and still no treatment.

Maybe it's time for the Cleveland Clinic, although I don't know what dept. to go to.

I said short, sorry.  Thanks for listening.
Sheila

[Chana M]

Oh Sheila.  I'm sitting here aghast, hand over my mouth (which makes typing difficult) with shock and horror.  Actually, I don't know why I'm shocked because you've been through this so many times before.  As have many of us.  And on top of it all for your husband to say that, not to back you up or support you.  This is just too awful.

You HAVE to see a different neuro.  This man is unprofessional at best - surrounding himself with an odd assortment of people - and the worst sort of old-fashioned doctor.  What explanation did he have for the Gallium scan?  How can he say 'the tests show nothing'? 

You should be really proud of yourself for the way you dealt with his onslaught about your emotional state.  You sounded assertive and clear, which is so difficult when the natural reaction is an emotional one, and yet that would be the worst possible way to react at that point.

In your heart of hearts you know that there is something out of synch with your body.  You need better support than you're getting - I just hope that we can give you just a little of what you deserve.

With warmest good wishes

[BonusMom]

Oh Sheila, how frustrated I am for you.  It's not all in your head and your fellow sjoggies know it!  Is there any way you can get a second opinion? Sorry, that issue has probably been suggested previously, but I am at a loss as to what to suggest.  Where are you from?

[wednesday mc haggis]

well we take you at your word, im am so sorry this is going the way it is, its heck on a handbike, not having ppl support you has to be the worst

I have to laugh at this insistance on depression and anxiety, i had post natal depression and you really just dont have the volition to come up with symtoms at the docs. If you were just anxious youd be less insistant and more flappy ,anxious ppl tend to have panic attacks and irrational thoughts, id say you were perfectly lucid and with all that going on its an amazing thing in its self ,if it was all in your head wouldnt it be just blooming wonderful , head easier to sort than these symptoms , paranoia ?? its one heck of a fixed nihilisitic delusion . makes me so angry to hear your going through this, want shooting some of these ppl .

You have coped amazingly well , yes your dealing with some terrible symptoms, but youve kept your sanity and you integrity , never forget that , be proud of yourself , you should be.

  sorry all we can do is listen, but at least we can do that

T x

[Scottietottie]

Sheila



I can't add to what's been said. I'm not often speechless. We are all on your side!!!!!

[ktfabian]

Sheila-

I've been there with my husband, and I think that hurts more than anything the doctor has ever said.  I'm so, so sorry that this has happened to you.  I know this won't help much, but my husband HAS finally come around.  I think it took a couple of severe pain episodes on his part before he finally got it, but his change has improved our relationship totally. I pray that he'll get behind you.

Can you find a new neurologist?  This guy doesn't sound like he's paying the attention to you and your symptoms that you need.  Fire him, if you can!

These symptoms are NOT being caused by your mind.  Please don't let them doubt yourself, and don't let this doctor who obviously thinks he lives on a pedestal way above the rest of us blow you off, either.  There are good doctors out there - maybe there's a rheumatologist in the doctor recommendation forum topic who could be of help?  For many of us, our symptoms started long before anything showed up on scans, MRIs or blood tests. 

Hang in there, Sheila.  I know that's hard advice right now.  We're here to listen when you need to vent or cry or whatever you need and offer what help we can.  For now, I'd go smack your husband right up the side of his head.  (I'm kidding, but there were times when I was tempted!)

You're on my Sjogren's prayer list and I'm praying that you get the help you deserve,
Tracy

[DesignerS]

Sheila,
I just wanted to add my support.  I am so sorry this happened to you.  Do you think your husband was intimidated by this doctor?  Since so many people think of doctors as "gods", they believe everything they say also.  I don't know, just a thought, or maybe a hope that your husband didn't think through what he was saying. 
Take care,

Designer        doctors are so frustrating

[Sjenny]

Sheila:

Have you seen this fabulous post from Linda?  I think you should have this saying made into a t-shirt and wear it if you ever have to see that senile doctor and his useless assistant again.

https://sjogrensworld.org/index.php?topic=4218.msg41353#msg41353

Hugs,
Sue

[Dolly Dimples]

 Sheila   , the last post from Sue,  absolutely sums it all up!
     It's brilliant!         I had a boffin like that ," Ah a slight case of dry eyes eh"?  "Stop using any eye drops at all, then wait until the eyes are irritating you, then use Hypromellose drops which are cheap enough at any Boots store"    I could have cried , but instead I picked up my handbag and said Goodbye!  He just did not have a clue about dry eye"
   Hang in there , Dolly x
                 

[allium]

Thank you, everyone, I am overwhelmed in a good way by all of your great advice.

I really don't know if I've reached the end of the line here in Rochester; this loony is highly regarded as the grand poobah of neuros here.  I'm sure I could find another neuro or rheum that could actually help me, but how, and where is the question.  My GP is useless other than for prescriptions.  I've now counting 12 doctors seen since last May; 3 GPs, two rheums, three ENTs, one chiropractor, two opthamologists, one reg. neuro, and now a neuro-opthamologist. My optho now is a gem.  Oops, forgot my dentist neighbor, he is wonderful too.

It sounds crazy, maybe it is crazy that I can have that many bums in a row. Maybe it is me. 

There is something wrong. I looked this doctor in the eye and asked him if he could explain a CRP of 9.1, a gallium scan that was abnormal for parotid inflammation, swollen and painful neck glands, abnormal shirmer's, sub-abnormal salivary scan, slurred speech, joint and muscle pain and all this numbness.  Obvious to me , he forgets most of everything done before, and he said, "No, I can't ."  Alrighty then, p--s or get off the pot.   Sorry for the crudeness.

I said I respected his knowledge as a doctor, and I'm sure if he knows of cases that all of these symptoms have a totally psychological cause , then that's great they can get a diagnosis.  I looked him in the eye again, and said, "Sorry, but I don't believe that is the case with me" . 

As for my husband, I suppose he isn't acting in a malicious way.  This is the way he is, and I knew that a day would come that something would test the mettle of both of us.  I shouldn't be angry at him because he thinks this is what support is; driving me to appointments, and buying me a TomTom so I wouldn't get lost so much. He is a poor communicator, emotionally uninvolved, and has always had me to take over and do everything. I'm sorry to say that he had a poor role model for a father, and a very enabling family  (as I have been to him too).  You can't spend thirty years with someone and not be completely emotionally involved, loving for the good and bad. But, reality shows, and even when it is what it is, it still cuts pretty deep.  I know I'm pretty much on my own here. So, I'm learing to deal with it.

It's been a struggle, but I managed on my own to arrange a skin biopsy with a dermatologist on Thursday.
You guys keep me going...thanks.
Sheila