My new neuro didn't turn me away after negative tests

[addicted2harleys]

Believe it or not, this is going to be a short message from me.  :).  Don't get used to it because it is probably just a fluke.  

I went to my new neuro yesterday.  The visit started with him telling me we had good news.  That's when he told me about negative MRI and LP.  In my mind I was saying, "oh, here we go again".  I was fully expecting a dismissal at this point because it has happened with me so many times before.  

He didn't dismiss me.  He did tell me he is pretty confident that I do not have MS.  Okay, I can live with that.  He said he would like to do a couple of things and then figure out some things.  I am to call him in a couple days.  He also told me that he wants to SEE what happens when I flare.  I am to get in the car and go to him immediately.  He told me he is available for me at any time.

He seems to be focused on my tremors.   Maybe because that is one of my symptoms that he can see.   He asked a bunch of questions regarding my family.  He was very interested in my dad's aunt, who died of Motor Neuron Disease in 94.   He did a nerve test on both of my hands (the kind without the needles).   He thinks I may have a hereditary neurodegenerative disorder/disease.   He also said he may send me to Stanford.  Anyone have any experience with Stanford?   I got the info he wanted on my dad's aunt and will fax it to him today.   Then, i will call him tomorrow.

I actually cried when he was talking to me.  I thanked him for not turning me away.  I couldn't believe the validation I felt with him.   It was quite overwhelming.  He cupped my face in his hand and said not to worry, we will figure this out.  

I found a neuro who believes in me FINALLY.  Go figure...cause then I remembered that I am moving in June.  But, that is another topic for another time.  I am focusing on the now.

Addi (you didn't actually believe my post would be THAT short, did you?  lol)

[shermay]

Sorry I meant Googling.

Debs X

[shermay]

Hi Addi,

Wow that's a turn up for the books hey? a Neuro that actually listened to you.

I agree with JJ even thought it's too late now) stop your Goggling.

Your Neuro sounds like a lovely man, so leave the Internet alone, and let your lovely sounding Neuro make the call OK

Hugs,

Debs X

[supermum_ms]

There are times when I still wonder, the times when I intake huge gulps of air and it repeats over and over and over (7 times in a row sometimes), little puffs of air is expelled totally out of proportion to the intake, as suddenly as it starts it just simply stops, I wonder where it fits. It's a bit hard to explain it right, I sort of sound like when someone is crying hysterically and they intake big gulps of air between sobs but I make no other sounds apart from the loud intake of air and i feel nothing emotional or physical before, during or afterwards. There is no discernible pattern! Another weird going on in a long long line of weird!

I dont know kiddo, sometimes i think its just easier to live in the here and now, living each moment as if your on borrowed time. I know it sounds so cliche but you can do nothing to change your history and nothing to really change your future when choice is taken away so living in the moment and enjoying everything just seems to make sense to me. I dont know how to give you that, maybe its just acceptance that the things that happen in life are never really within your control. I dont know what it is, I look at my kids and see how incredible they are, where as others look at the same kids and see the problems, the disabilties and never get to experience the true beauty of them.

Its perspective I guess, sometime, somewhere along the line i've switched off the negatives and see everything with promise, I think it goes beyond optimism but thats probably the closest thing we've got to explain it. So just for a day, look at life through my sight (lol not the double vision sight but my insight) focus on the positive and if you find it hard when the negatives seem to shine brighter. I want you to challenge them by finding something positive within the negative, there always is a positive if you look for it, it is there, you just have to find it. Try for one day to alter your perspective, it may help and if not, you've lost nothing.

HUGS.................JJ  

[addicted2harleys]

Hey, guys-

Thank you so very much for all of the support, love and hugs in your responses.  It truly means a lot to me.  I am sorry it has taken me so long to respond.  

JJ - Too late.  I googled the heck out of it and all I managed to really get out of it is fear and more fear.  Yeah, I understand Motor Neuron Disease = ALS.  And I understand the connection with what my new neuro is thinking.  When I first found out about my dad's aunt, I found the connection.  At that time I blew it off as I was sure I was MS...not that.  Now...I know it fits.  

A family friend died of ALS just recently.  I had a couple of conversations with him before he left us.  He was concerned about me.  He saw it, too, in me and said so.  

So....I don't want it to be ALS or something in the same family.  I want it to be MS.  I am having a rough time of this.  Kinda like la la land...can't think straight.  Tried reading a book and I just can't stay focused.  I don't know what to do...

Michelle - I think he will very much compare to Dr. S.  That feeling just clicked with him as it did when I was seeing Dr. S.  :)

I was born and raised in AZ.  I moved from there to Ohio when I was 30.  It took me 10 years to realize that I was allergic to snow and cold.  Haha!   I would love to go back and visit once in a while, especially in the fall.  I will miss the colors.  

No, we are moving back to AZ.  I need to be around my new grandbaby, for sure.  Little Wyatt needs his grammie!

Kelly - Not too terribly far.  An hour and a half.  Okay, not very close either.  Lol

GG - thanks for the info on Stanford.  I haven't heard back yet to know if he is referring me there or not.  I'm not in SLO.  My neuro is.  I live in Lompoc.  My mom agrees with you regarding the drive up.  :)   It will definitely be an overnight visit for us.  Are you close to Stanford?

Julie, you are absolutely right.  I was definitely emotional with him not turning me away.  When he cupped my cheek, I saw in his eyes that it affected him, as well.  

Samana, exactly.  You said it perfectly right.  I felt like my uphill battle came to an end.  Even though I feel like a new battle is right around the corner....

Hugs and thanks to you all,
Addi

[michelleric]

I am SO glad you finally found a good neuro who listens to you and wants to help you.  Perhaps he will be as good as Dr. S?  That would be a huge blessing...

Moving again? Coming back to my area? Probably not, most likely near that new grandbaby boy!

Thanks for the good news,
Hugs,
Michelle

[anon07072023]

It's so wonderful that you finally found a neuro that's not going to dismiss you or your symptoms.  I know that a lot of us on here, completely get where you are coming from.  I really hope he can figure all of this out for you, so you know what you're dealing with.

You could have so easily given up after the 1st neuro.  It's so good to hear that you had the strength and the committment not to listen to them, but to listen to what you KNOW is going on with you.  

I hope that you don't have too far to drive, when you go in to show him your flares.

-Kelly

[supermum_ms]

Hey Addi,

Your neuro does sound like he's tunning in to whats happening to you, compassion is a human force like no other. LOL my good doc kissed me on the cheek which was totally unexpected and that one simple spontanious show of concern and caring, was more validating than actually finding out my MRI did have T2 lessions, weird!

My doc was at first thinking MS or motor neuron disease, I'd no clue about motor neuron disease and innocently mentioned it, once Quix let me know it was ALS i've totally ignored it, no googling girlfriend, you hear! Doc hasn't mentioned it again, he's sticking with MS so i'm taking him mentioning MND as it just being a possiblity to mention and nothing more, maybe its the same with your doc.

So far so good!!

Cheers.............JJ

[Guitar_grrrl]

Oh, Addi, he sounds WONDERFUL!  I'm so glad he didn't show you the door right away!

The folks at Stanford are good, but keep in mind it's a HUGE teaching facility and the "big wheels" there are very good.  I have friends who swear by their MS neuros, I'm sure there are neuros there who will help get to the bottom of this.  Are you still in SLO?  It's a pretty drive up the Salinas Valley this time of year...

[Sarahsmom46]

I am going to add my happiness about your neuro appointment to the rest of the posts.  Validation is an amazing feeling.  He's validating that you have something going on and he's committed to sticking by your side while you guys figure this out.  What more can you ask for, right.  

I think that your comment to him about being thankful that he didn't turn you away is a remark that probably hit his conscience.  I hope and pray he follows through with your complicated case and more importantly, I hope you both will come to a final diagnosis soon.  

Be strong and keep focused on finding the answer. It is out there.

Love and hugs,

Julie

[Sumanadevii]

In a way, it is sad that we have to celebrate that a doctor finally listens to us but it brings such relief that help is on the way...that you are no longer alone in the battle.

I am happy for you.  I remember those feelings all too well as I left the neuro I have today.  I knew she was listening.  I knew she heard me.  I knew my battle had come to an end.  Even if she had never found the cause, I could feel her compassion.  It was such a relief.

[addicted2harleys]

Ooops!   I meant to say cart before the HORSE.  lol.  I have no clue where post came from.  I have been throwing off the wall words in while I am talking.  I guess I am doing it with my typing, too.  :/

Addi

[addicted2harleys]

JSSL - I had research on my mind all day yesterday.  I think I read every single link there is all over the web on Hereditary Neurodegenerative Disorders.  They all pretty much gave me the same info.  I should have not done this...it may be a little too late, but I am not going to research anymore.  I have been patient for six years...I can wait a bit more.  :)

Ren - I hope you are feeling better, hun.  I haven't been keeping up on the forum so if you have posted anything in the last several days, chances are that I missed it.  

I did put the cart before the post.  You are right.  A lot can happen in 3 months.  Thank you for reminding me of that!  :). And this truly was the best validation that I have ever received.  To have a neuro dive into my symptoms and want the answers as much as I do...wow!  Such a relief, for sure.  Thanks for the snoopy dance!

Ess - thanks for taking the time out to show me your support.  I know you are feeling rather crappy.  I hope you don't see my response until tomorrow and that you are sleeping or resting now.  Sweet dreams and calmness is sent your way!  Many hugs back to you, my friend...

Thanks, everyone!
Addi

[essdipity]

Addi, I'm not exactly the soul of brevity either, but I have to be now because it's been an exhausting day.

So I'll just say I'm so glad you have a great doctor. My eyes welled up when I read your post. Take things one day at a time.

Many hugs,
ess

[rendean]

Dear Addi,

I am SO happy you found such a kind neuro!!! You have done your time waiting for him. Good news that he has connections at your next location.

What a sense  of relief and validation you must have felt...I bet it is still indescribable to those of us not in your shoes!

A lot can be done in 3 months time. And, don't go putting the horse before the cart as my Dad would say. Stop googling and start celebrating the beginning of an answer after all these years!

Snoopy dance on the  way...
Ren

[JSSL]

Hi Addi -

How wonderful that you found a neuro who believes in you, I am sure that is a HUGE source of comfort. I might suggest limiting your research at this point and letting him take the reigns so to speak....however, if you are anything like me that is NOT possibe!!!

Take care,
JSSL

[addicted2harleys]

Thank you all!  :)

I think I am actually in shock today.  I can't believe I finally found a neuro who is in this for me.  I wish I would have dumped my last neuro long ago.  But I try not to keep that in my head because I can't change the past.  

So then I think of the future.  lol.  I finally have a neuro.  But I am moving away in three months.  I already have been checking out my options for neuros in AZ.  I am pretty sure I am going with Barrows.  Coincidently, my new neuro use to practice there and he told me he thought I was making a great choice.  So this is encouraging.  

Then I think of the now.  No to MS.  I truly am perfectly fine with this.  I don't want to have MS.  But I always research things.  Can't help it.  So, I researched Hereditary Neurodegenerative Disorders.  I decided I really don't want to have this...more than I don't want to have MS.  With MS, there is a normal life expectancy.  With the other, not so much.  I don't know, I got scared while researching and had to stop.  

Sarah - I really did feel a wash of relief.  It was a physical and mental feeling.  It took me six years to accomplish this.  I am so very glad I found him!  :)

Thanks again, y'all,
Addi

[piggygirl17]

YAY! I'm so excited for you. This is such good news. Now you can finally get your answer!

[AMO]

Addii dear,

I understand your emotions.  I have wonderfully attentive doctor  and it  makaes the world of differnce. YOu are in the right hands , take it easy today. amo

[Sparkysarah]

I am so happy for you Addi and just felt a wash of relief that at last you have found someone who listens and want to help. You have had such a hard time in so many respects andhyou want is answers. If it is not MS then hey this is good news and it sounds like he is determined to help yo find out what is going on.

Go girl and it was a short post for you!!!

Love Sarah x

[tiredaz]

Finding a neuro who is willing to help you explore what's really going on is a real gift!  I know you just feel better just knowing someone believes in what you're saying.  I hope you are able to find good help when you move to AZ.

Hugs, Linda