Neuro visit tomorrow

[addicted2harleys]

Okay, I think I am ready for my visit tomorrow.  I have my time line ready and medical record book.  I have been doing a lot of researching in the last couple of days and have some questions because of it.

I had read the HP regarding keeping an open mind.  I ran across info regarding Sjogren Syndrome and I feel like I need to consider this.  I do have dry eye pretty bad and I also have dry mouth and skin.  I don't know if the neuro issues I am having could be related to this syndrome though.

My problem is...should I address this tomorrow with my neuro?  What if I do and he completely dismisses ruling out MS because of it?  I am hoping the neuro will order new MRI's on 3T and I don't want to risk him not doing so.  Can I just wait and address it with my PCP next week?  Should I still follow through with my referral to UCLA?

Since I have been flaring since the beginning of May, if I have new lesions will they show up on an MRI if I get it in the next week?  I searched past posts for this but couldn't find a clear enough answer.

I also have a lot of other things scheduled in the near future.  I have made an appointment with a counselor.  I figured it couldn't hurt.  Maybe she can help me with acceptance (for wheelchair and loss of independence).

I have hearing tests and speech therapy lined up, too.  I also am going to have my PCP refer me for physical therapy and possibly a neuro-ophthalmologist.

I feel like I am moving in the right direction, but now I am confused about the Sjogren Syndrome.

Also, I found out my twin sister does NOT have MS.  She has RSD.  Long story....lol

Sorry I haven't been around much.  Between working through this exacerbation and trying to make sure I have everything together for neuro, I haven't been able to keep up.

I hope everyone is doing well,
Addi

[addicted2harleys]

I do wonder if he will think about what I said to him about how it made me feel to hear him say that.  If it makes him stop and think before he says something like that to another person, then all the better.

I am generally not a hider.  I like things out in the open.  I don't like aggressive confrontation but I do usually tend to go ahead and say something that is bothering me right away.  I hate stuffing my feelings.  lol  

I agree with you about shouldn't have to be in the position in our medical care (or lack of) in the first place.  It definitely makes it harder.

I agree about the big pill.  I swallowed it and it is kinda stuck in my throat right now.  I did do the chocolate theory immediately after neuro appointment.  lol  I told myself that I deserved it.  

Not sure if you saw it or not, but I did post about my neuro appointment, too.  Here is the thread, in case you wanna read it:

http://www.medhelp.org/posts/Multiple-Sclerosis/Im-back-from-neuroand-wow/show/1274156

Thanks again!  ;0)

Addi

[supermum_ms]

Ha no wonder your feeling shocked, boot strap guy just ate his words! Big deal me thinks!! Fun aside, being a hider too, i dont like confrontation at the best of time but having to go to great lengths to get medical help, is a bit too confronting when your not well and shouldn't be even in the equation but too often its how things work out.

Getting the news you do have something wrong, and you know how long this something has been going on etc is valitation, you were right but the reality is still a big 'pill' to swallow so please be kind to your self whilst you get your head around it all.

Cheers........JJ

ps chocolate might be in order!!

[addicted2harleys]

Thanks, JJ.  ;0)  You know, I think that is EXACTLY what I have been feeling.  The validation after 6 years felt real good....but I expected to be much happier or something.  Maybe the reality of it, too, is what is eating at me.  That just might be it.

I think I am still a lil bit in shock.

Addi

[supermum_ms]

Wow Addi,

Finally your getting heard, wow, about time hey! My fingers are crossed that your on the road to discovery, where ever that road may lead!

I think anyone who's been in limbo will understand the sweet pleasure of validation, take a breath though, you dont want the reality of it sneaking up and biting you on the butt.lol

Take care and keep us posted.

Cheers........JJ

[addicted2harleys]

Ren - Sounds more and more like the lip biopsy is the way to go.  Wow, they put you through the ringer!  ;0(  

Thanks much to you both for the good thoughts for my visit.  It worked!  ;0)  I didn't get a whole lot of answers, but I sure got validated!  And, I do know I am on my way to something or other!  lol

Addi

[johnnymutt]

I'm really hoping everything is going well for you at the visit today. I'm curious of the outcome. Good luck on some useful answers!!!

Johnny

[rendean]

Addi,
Sorry I 'm late to the party but I have been thinking about your upcoming appointment.


I wanted to answer more about Sjogren's. I was dx with it some 7 or 8 years ago. They thought all my symptoms were do to Sjogren's until they did a lip biopsy since all my labs were negative.

After all the hoops were jumped and someone FINALLY did the lip biopsy (gold standard for dx Sjogrens) I received my MS dx. I still have dry eyes and mouth but it is simply sicca syndrome.

I hope all goes/went well. Let us know the outcome.

Ren

[addicted2harleys]

Calm  Cool Collected

That's me.  ;0)  

It is amazing how just doing all the work with the time line and getting my medical book all together kind of put me in a new something or another in my head.  Hmmm  I know what I am trying to say, but I just can't seem to relay it.

Anyway, I feel like I am in a good place.  I know what I need to do and feel like I am heading that way.

I have to say that just talking to people in this forum and looking through HP and past posts helped me a great deal in getting me to that place in my head.

I don't know if I have MS.  Or Sjogren's.  Or something else.  What I do know is there is something going haywire in my body.  And I know I am not going to sit back and just wait, as I have been told to do.  

Though more testing frightens me and I am not looking forward to it, I am going to push forward - while cool, calm and collected - to get to the right doctors who can help me figure this out.

I have notes I am taking with me today.  I only have the symptoms that are the biggest for me on that list - to discuss with neuro.  And, I plan to let him lead the visit.

I feel positive right now.  Hopefully the visit goes well today.  Fingers crossed....eyes too!

Thanks, ess -

Addi

[essdipity]

Can't answer about Sjogren's, I'm afraid. I know very little about it. I just advise you not to overwhelm your neuro with symptoms. You have an awful lot going on, so you'd best stick to the main things for this visit. A good neuro will figure things out for you.

Yes, take the opportunity of getting another MRI. It could show a lot.

Good luck, and be calm.

ess

[addicted2harleys]

Thanks for the info on Sjogren Syndrome.  I did see that it is a perfect MS mimic and that it does cause neuro problems.  And, I do want to get some tests done to check it out.  Hopefully the lip biopsy thing won't be in the works cause the thought of that scares the begeebees out of me.  

I do plan on hitting the neuro with the topic of the dry eyes and mouth, so hopefully he will catch that, as you mention.

My question for you, and anyone else who may know, is...well, my neuro probs happened well before the dry eye, dry mouth.  By like 5 years.  I always thought the dry stuff was from the meds I am on.  Would this also be characteristic of SS?

Thanks for answering my question about the MRI.  I should still get it done though, right?

Hi, Frank - Thanks for the back patting....made me feel good.  ;0)

Sarah - Thank you!  And, thanks again for all the feedback you have given me over all this, too.  Yes, it does feel like I am back in school!  lol

Lois - Yeah, I was thinking of keeping with UCLA, too.  If anything, maybe they can figure me out and get me some relief with whatever it may be.  Thank you for the assurances that I have covered all my bases.  ;0)  Hugs

Thanks again, you all-

Addi

[RedFlame]

Hi Addi,  I thought you were probably busy preparing for the appointment.

I do think that you should hang on to your appointment with UCLA,  you want to get as much help as you can and more heads could mean a better consensus.  

THe other appointments you made are very positive and will the help the doctors realize that you take your health and well-being very serious.

I will be thinking and praying for you today!   lois

[Sparkysarah]

Just to wish you all the best for your visit to the neuro, It feels as if you have been preparing for an exam and it made me think how much we are in the hands of our physicians.  They are key to our dx and subsequent treatment and I really hope that all your hard homework pays off and that your visit goes well for you.

Cheers

Sarah

[Csativa]

Hi Addi,

The work you have done is what I would like to do before seeing my neuro - but unlike you, I usually have a hard time getting off first base!  Very nice job Addi.  You already know where you want to go with this.  And although you know it, I'll give a big second to Lulu's suggestion; don't suggest anything to the neuro at this point.  

Good luck tomorrow
Frank

[Quixotic1]

I agree that you probably should not mention any disease by neame except ones that you know pertain to you or your family.

As far as Sjogren's Syndrome, this is an autoimmune systemic disease, rather like Lupus, that can perfectly mimic MS.  So if the neuro is good at his/her job there will be a review of systems questioning in which you could offer the problem of dry eyes and dry mouth.  The classic triad of SS is dry eyes (inadequate tear production), dry mouth, and infiltration of the lip and salivary glands with lymphocytes.  

Another common symptom is arthritis.  There are specific blood tests for Sjogrens and they are best done by a rheumatologist unless the neuro is very good at understanding the rheumotologic autoimmune diseases and testing fully for them.

When new lesions form they typically show enhancement for 3 to 6 weeks, uncommonly longer with one case report of 6 months (very rare with only one person reported with this)  I would say that you shouldn't expect to see enhancement.

Good luck tomorrow!

Quix

[addicted2harleys]

That is exactly what I thought.  Thank you, Lulu.  I have notes, but they all revolve around my symptoms...and what HE thinks of them.  ;0)

Thanks again...
Addi

[Lulu54]

Addi,
Your time has been well spent preparing for this visit.  Final advice from me - don't suggest anything to this doctor.  Be quiet and be prepared to ask questions  - let the doc take the lead.  

As soon as you mention Sjorgens or anything else, the red flags will go up that you have been researching.

good luck - I hope you get somewhere tomorrow.

Lulu