Goodbye MS Specialist...Hello Neurologist

[kerrtelli]

So, as I posted last week, the MS Specialist said that at this pint there is nothing else he can check in regards to MS.
LP was negative...VEP negative...brain MRI loaded with lesions...spine MRI two slight bulges....and a partridge in a pare tree!

He said that he wants to keep following me though.  I am assuming that he thinks it could be ms but doesn't have enough evidence to diagnose.  YADA YADA YADA!

Either way, I hve an appointment with a neurologist closer to my house and will present him with all of my documentation, discs, etc.  I told the secretary that I was seeing him because I have ms like symptoms but was not diagnosed.  So I am seeking a second opinion or hoping to figure out what it is.

Any advice, opinions, words of wisdom.

Life goes on.  I hve to update my timeline and add to my symptom list.

Despite all of the "health" stuff, I have a great life.  Great family.  Truly blessed.

I Hqve to admit that all of these health issues have made me take a second look at my life.

What I mean is, I Hqve been thinking about what my husband and I though our lives would be like, or more accurately what we relly loved to do prior to kids.

We always love to take road trips, loved the water and being spontaneous.

We now live in q house we really can't afford in ct.  Struggle to pay the bills and he works constantly.

I told him yesterday that we should pack it up and seek out the life that we can look back on and say that we lived it the way we wanted to live it.  I don't know what that means or woud look like.  Maybe I am having amid life crises.

Does that happen at forty?

Ayway, thanks as usual for listening and good nght!

Kerri

[kerrtelli]

Thanks Irene.

I find that having some sense of humor about this all keeps me a little more grounded so I don't feel sorry for myself all the time.

I have four kids so packing it up isn't as easy as it sounds, but I I'll definitely not take stuff so seriously.

I qm glad you like my writing style.  I actually did publish a book about six years ago.
It sold about a hundred copies so I didnt get to spend those royalties on anything more tha candy bar.

Either way it was an accomplishment.

Thanks again.

Kerri

[Irene5353]

I absolutely love your post!   Good for you for being proactive!  The diagnostic dance is the worst.  By rights you should have been diagnosed.  What kind of lesions?  Is that the problem.  

Just know that there are some people that carry a diagnosis informally, are seen in an MS clinic and are considered highly probable for MS without a definite diagnosis.  This can go on for an awfully long time.  I know I live this.

One MS specialist I saw for nearly 20 years diagnosed me with MS and then he retired and the next doc took away the diagnosis - I was on Copaxone and doing really well for the first time in a very long time - I went to a third MS clinic and this doc says some people are very very tricky to diagnose and the doc simply do not know enough yet.  Well...ain't that the truth!  Persevere - with the lesion load you have you will be diagnosed.

I love your idea of kicking the grind to the curb and enjoying life.  It may be best for both of you.  Good luck - your voice was very refreshing maybe you should write!  all the best.

[kerrtelli]

Thanks everyone.  I am hoping that this is a good doc.  We'll see.

I have always been spontaneous and I don't plan on stopping now.

It's funny.  When this all started it was so debilitating.  Now I just do things a little slower and have medicine to get me through the day.

I really never enjoyed running anyway.

I'll keep everyone posted.

Kerri

[summerluvr]

I had a mid life crisis at 25 LOL!  I am 34 now.

Yes live your life and do what you want to do!  I am getting married in 6 weeks to my amazing "rock" who stuck by me through my cancer diagnosis and treatment.  We are enjoying this period of stable disease, where I do not not need to do treatment and hoping for a very long remission!  Got engaged last winter and getting married 6 months later, then going to Europe for a very busy two week tour to try and sand see as many places as possible, because I don't know if I will ever make it back there.  

[sllowe]

Hey Ker,

It's understandable for you to consider these things no matter what caused the thoughts. Its nice to hear that you can lay it all out to hub, and seriously consider changes where needed, or wanted. I don't think it's a crisis at all, lol But, that was funny you said that. Guess 20s and 30s are a little more risky, and come 40 it's time to get to the nitty gritty a bit more.

I'm excited for you to present yourself to this new reg. neuro. It's ashame you were not dx'd by the specialist, but I do truly believe in good reg. neuros. Though it seems it's really hard to get a good one, they are out there. I pray this one is the one.

I still don't know why there was not enough info for the previous guy to come up with something definitive, or at least possible. Truly I'll never understand why this happens to so many of our members here.

But, definitely hang on to that hope that he's going to help you, and be sure to ask him straight up for his help. Keep that eye contact - you can do this.
Always glad to listen :)
(((hugs)))
-Shell