New Neuro Visit

[floridamom2]

Hi all - just wanted to say thanks for all your support in the past and getting me to where I am today!!

Went to see Siddy's neuro today in Tampa.  Great guy!!  Went thru my timeline step by step and reviewed every record I brought with me very thoroughly.  Did a very thorough neuro exam but did not note anything except some patchy numbness.  

When he was done he discussed the fact that although MS was at the top of his list of possible dx's with 2 negative MRI's of brain and spines, no neuro deficits today and my pattern of symptoms being a bit different than most typical MS cases he is not thinking that will be my final dx.  He has ordered a LP, VEP, Sjogrens antibodies blood test and a anticardiolipin and we will talk again when all the tests are complete.

I asked him if there was anything else that this could be and he said he really thinks everything else has been ruled out so far and that if my LP and VEP come back negative he can say w/ 95% certainty this is not MS.  

I said so I am back to "Post Viral Syndrome" and he said well that is the dumping ground for all neuro cases that do not fit into any mold but we really have nothing else to go on.  He did not think my foot pain fit any rheumatological disease either so he just recommended I up my Cymbalta to 60mg from 30mg and see if that helps.

I am waiting to see when my LP and VEP will be scheduled and I had the blood tests done today.  

I don't think I can stay in perpetual limboland for the rest of my life   I don't want to live like this anymore being a burden to my family and embarrassed by my friends disbelief.  I know you all know where I am right now and that makes me feel a bit less lonely but this still bites.  I want my life back.

Thanks for listening to me vent once again!
Kristin  

[floridamom2]

Quix, Santana, Jo, Penn & Shelley :

Thank you all for your posts, thoughts and wonderful support.  I really appreciate each and every one of you!!  

I have cried a lot today so I guess increasing my Cymbalta for the nerve pain would also be beneficial for my depression.  

I know I sound crazy that I am so depressed even though there are still tests to be done and I still may get an answer this time.  I think I am reacting to the possibility that I will not and you all are very right,  I need to keep my chin up and stay positive that I will have answers eventually.    

Quix:  It does so much help me to have your opinion that this is probably MS.  While I do not want this disease, I know something is wreaking havoc on my body and I can't accept that it will never be diagnosed.   I value your opinion immensely!!

Jo:  He did tell me to up my Cymbalta for the nerve pain and I will do that but if it is not better by the time I go back for my follow up after the tests are done I will ask to try Neurontin or one of those.  This flare has been an extremely painful one and I don't remember this level of pain in previous flares.

Love and Hugs to you all!!!
Kristin

[sllowe]

Hey You!

This sounded like a really good appt.!  I'm happy for you Miss!

Of course you are sick of these so-called friends.  But, please, don't you go putting any more un-do pressure on yourself.  Wipe that burden word out of your mouth...tee hee.  You are in good hands w/this Dr., you are moving forward.  This is all you can do right now, and you are doing it!

xxoxo
Shelly

[pennst8r]

I'm so sorry you're without answers, bu tso glad that you're not giving up. I find comfort in believing that whatever it is we are individually fighting WILL eventually out itself. You will get answers...I just hope that it is inthe very near future

Hugs

Penn

[cjacks]

Hi Kristen

This new doc. sounds like he's a keeper.  He's listening and NOT dismissive and doing more tests.  He's on the right track.

Looking at his percentage rate on the outcome of the new tests, should they come back neg. , ' 95% sure not ms' ,  then that translates into 5 people in one hundred , with your test results,  would have MS .  Right ??  Next time you see him you could mention this .(smile meekly )      :)

Was he able to give you anything for your pain ?  Did he have any comments on it?

I hear your frustration and fully understand .  Its such a cr@ppy thing to go through.  I'm sooo  sorry you're having to suffer this.  I'm here for you anytime .

Lots of hugs and love

Jo        PS  Our friends and relatives can be quite unbelievably insensitive to our illnesses.  even WITH a dx

[santana8]

Hang in there and lean on your true friends here, because you know that we do understand and totally believe you!!!  I am seeing neuro # 3 in a few days!!   Don't worry too much about having no lesions show up on MRI yet, I have 10 lesions on my brain and after two years they still don't know if I have MS or ADEM.  I had a negative Spinal tap with no O bands and have not had a second attack, so I am still stuck between these two. Sjogren's may be a possibility with me also.

You know , whether a person has many lesions or no lesions showing up, it still seems to be the same waiting game. We will get the answer someday, I just feel that in my heart, so hang in there with me and all of us here in limbo, because together we are stronger!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Hugs,
~Santana~

[Quixotic1]

Okay, Little Bear, you just said what I was going to say to you, lol.  If I remember what you were going through from last summer until now, it has been marked with complete disbelief about your suffering from just about every doctor that you met...and even some from your family.  Now, we finally have got you to a doc that is patying attention and who clearly believes you!!  We have said all along that this is the first step!

We have also known that you weren't completely typical of MS (though I still think that WILL be the final answer) so at least now the search is being conducted with thought and intelligence.  Yes, you will come to an answer.

And, with my newfound understanding of Sjogren's, I'm glad that's being looked at, too.  Do you have the history of dry eyes and dry mouth?  

We DO know how you feel and the deep, lingering hurt caused by people and docs not believing us.  But, as you get more credence from your doctor, that will transfer to others.  It shouldn't take that, but sometimes it does.

Be gentle with yourself and know we love you and are here for you!

Quix

[floridamom2]

Thank you all so much for all your love and support!!!!  I am exhausted from our day.  

After reading all your posts I agree I must have hope that I will eventually have answers.  This neuro was great and he is still looking and doing the tests that the other 4 previous have not done.  

Wanna, Zilla, Ada, Elaine, Rena, Doni, Andie, Tonya & Tammy:  I cannot tell you all how much your support and sharing mean to me, just to not be alone in this unfortunate adventure and be able to talk to people who know EXACTLY where I am is keeping me sane.  Thanks again - I love you all!!
Kristin

[wingnut19]

Hi Sweetie!!

I'm so sorry that you're still feeling so frustrated and lost!!  Like others have said, though...You just have to keep fighting....

Kris, do you remember back in March (or so) when someone else was 'trying' to give up and I asked her a simple question???   The question was:
IF THIS WAS ONE OF YOUR CHILDREN OR YOUR HUSBAND OR EVEN YOUR PET--WOULD YOU EVER ONCE THINK OF GIVING UP ON THEM???

Please remember to give yourself that same consideration, my friend!  You deserve it...

I totally understand the frustration and agony of not having answers....Don't forget that I'm right in that SS WTF right along side you.....I will not abandon this ship and I won't let you either!

LOVE AND HUGS

Tammy :)

[tonyad]

Just wanted to chime in with the others and to tell you that I feel for you.
Are you for sure going to go through with the LP?  Please keep your head up :)
And as far as the 'friends" go...I agree with Ada...You do not have to be on the defense with "real friends". They are sympathetic to you feelings.

Big Hugs to you!
~Tonya

[Wobbly]

Hi there, seems like you had one of those appt...I had one last week.  It seems like when you are in Limboland it happens quite often and can happen for a few years or more.

We understand how you could feel frustrated and wanting to just give up on finding out what is wrong... My opinion would be to do what this Dr is asking and wait for the results to find out more.

If you need some time without Appt or thinking about what it might be...take some time and know that we are here to visit with...chat .. vent.. whatever... OK.

There are soooo many of us here like you in this situation...you are not alone and we understand.
take care and stay in touch

andie

[doni54]

Hey Sweetie,

You sound like you are so down, and I wish I was there to give you a GREAT BIG HUG!!!  Please, consider yourself hugged, okay?

I agree with Rena about your new neuro, he does sound like he is willing to go the distance and find out what is wrong.  Please don't give up, you will get your dx, I just know it.

It doesn't hurt to take a break from your search every now and then, I just don't want you to give up totally going after that dx.  DON'T BE LIKE ME!!!!!!  I should have kept up my search when I had the insurance and the energy, now I'm just stuck being in total cog fog with a body that doesn't work except to hurt!!!!!!

You know I'm here for you and think of you everyday and you are always in my prayers.  I'll pm you later to check on you.

Love & Hugs
doni

[Rena705]

Hey Kristen...sounds like you might have a winning neuro on your hands and he wants to get to the bottom of things for you eh?  So why so down?  Think of this as embarking on a new journey with a new guide that has an open mind and isn't bogged down with a closed mind from the past!

It sounds to me like he is interested in your case and although he did say that "Post Viral Syndrome is the dumping ground for all neuro cases that do not fit into any mold but we really have nothing else to go on" but he is ordering an LP,  VEP, Sjogrens antibodies blood test and a anticardiolipin so he is still looking!  Please don't give up hope honey...in my mind if you have a doctor that is still ordering tests and still asking questions, you have a doctor that wants to know the answer and will not stop searching until the answer is found!  You have a lot to hope for honey...please don't give up yet ok?

Lots of Hugs,

Rena

[monotreme]

Hi Kristin,
   As a spouse of a man who is deteriorating in limbo land, I would have to say to give yourself a break for a few months.  Try and enjoy the rest of the summer .  

   It becomes so mentally taxing and demoralizing to go from neuro to neuro and hear the same thing.  Craig does not meet the diagnostic criteria since he has small lesions.  It is exasperating.

  Craig took off for the last six months and did not go to any neuros.  It looks like it is time to start again, but those last six months felt good  to not have appointments to chase down and neuro nonsense to listen to.

   I hope you can find some peace and yes, please take at least 1,000 units of vitamin D3 each day.  More if your level is low (below 30).

  Elaine

[spastic]

Hi Sweetie, I am with Wanna on this, you have to keep fighting.  This road is very hard and bumpy and darn it, I forgot to put on my shoes!!!  Sweetheart, keep going, we will always be here for you, I know that it feels like a lonely way to travel sometimes but we got your back.

And as far as your friends go feeling embarrassed by you, all I can say is shame on them.  That is not a way to treat a true friend, true friends are the ones who will take your call at 2am, will give you a kind ear when your having a hard day, and especially, and I mean this, true friends will be there when you are ill and help you when your not able to help yourself.

I hope you don't take offense to that last part, I have been hearing a lot of the losing friends things lately and it makes me so sad.  I guess I want everything for everyone to be normal again.  I always want to be a true friend to everyone and I try hard everyday to be that good friend.  I know how hard it is for you with your friend thing Honey and I wish you didnt have to go through that but always know that we will be here for you.

Love Ya Sweetie,

Ada

[Momzilla]

Hey!  You sound so down.  Don't!

I can't believe this is actually ME talking.  Because I have actually sworn off doctors for the time being.  I refuse to see one more.  I KNOW where you're coming from, I do.

But do NOT get down on yourself, Kristin.  These docs have their stupid criteria parameters to work within and refuse to think outside of them.  I can't really blame them.  They have to answer to someone, I'm sure.  And, you and I don't fit those parameters YET.  Someday we will.  But for now, we will have to bide our time, take our high doses of Vitamin D, keep our symptom journals (not too crazily) and wait for our evidence to catch up with our disease.

It's not fair, I know.  It kills me that MS is ruining my body and I can't take medication to stop it.  But, I can't blame any doctor for not giving me any medication when I don't have ONE tiny lesion or ONE O band.  

I'll have them some day -- I think.  If not, I'll have to face that, too.  But, don't beat yourself up.  Just try to relax and give yourself  six months at least to forget you're sick.  Give your family that time, too.  It's OK.  You have us to talk to.  You have me and I have you.  I believe you.  I do.

Feel well and take your Vitamin D.  Promise me!

Peace,
Zilla*

[Want to feel well!!!]

My heart goes out to you, Sweetie.  I know it is hard to keep hoping and waiting, but it is necessary to keep going.  You can have your life back, and it isn't fair that you have to keep fighting to for it, but that is also necessary.  

You vent away all you need to and know that we support you and keep you in our thoughts and prayers.

It sounds like this guy is going to be helpful  and perhaps he will finally put the puzzle together and give you your life back.

Best wishes to you...((((BIG HUGS))))
Wanna :o)