Update From Zaphoon

[Zaphoon]

Well, I just returned from a visit with the neurologist who hadn't yet received my records from previous doctors. He did a basic examination (no NCV or EMG) and came to the conclusion that I have neurological issues that need to be diagnosed and dealt with.

I saw him write down a lot of 3's and 4's on the reflex testing. He also stated that hyperreflexia and spasticity (present in all 4 of my limbs) go hand in hand.

We talked about MNDs and he said that PLS could fit my profile and ALS was, for the time being ruled out because of 2 previous clean EMG's (that I told him about). He would not do a 3rd unless he thought there would be a need down the line. In the meantime, there are tests that he'd like to run (we talked about a possible lumbar puncture, muscle biopsy and more blood work) once he has results from my previous tests. He also mentioned the diagnosed process could still take a while. Oh, Lymes has been ruled out, too.

Thats all I've got for now!

Zaphoon

 

[tmasters]

Damn, Zaphoon, when did you go from pinched nerve to this? Maybe I missed something.

From the tone of your post it sounds like you were expecting to hear all of this and it's no big surprise. Either that, or you're really, really, really, really good at accepting bad news. Anyway, at least you don't have any LMN stuff happening yet that we know about and it could be something else.

Hang in there and I'll be praying for you. Keep us posted on what's happening with the follow-up.

Keep the faith,
-Tom

 

[Zaphoon]

Thanks, Tom.

Yep, I've been hoping this progressive muscle weakness stuff could all be chaulked up to the pinched nerve thing. I still have hope it may.

Thanks for the thoughts and prayers.

Zaphoon

 

[planningguy]

Zaphoon,

I wish you had better news, though it sounds like there are still some more things he would like to fish around with. At least you have those clean EMG's to hold on to. We'll be thinking of you.

Best wishes,

Robert

 

[Zaphoon]

Robert,

Thanks for the thoughts! I'm not going to hurry this guy and he seems like the sort that is always up for a good challenge. He was very thorough with his questioning (diseases/disorders in the family, etc.). I'll keep you posted.

Zaphoon

 

[rose]

Kim,
Well, in a way it sounds better than your last visit at the other neuro. Whoever thought it could be so hard to get answers, right?! I like that it sounds as if he took his time with you, and wanted to listen. Having a doctor's interest is half the battle.

Let us know when you're scheduled for those tests.:neutral:

 

[Zaphoon]

Rose,

I was with him for about an hour and feel like this guy will get to the bottom of things.

Hey, by the way, is your avatar a photo of another of your beautiful daughters?

 

[rose]

Kim, you are so full of it! That was taken Christmas morning right after I got back from picking my VERY lovely in her own right, daughter up from the airport...and getting a flat tire on the way home.... and waiting and waiting and waiting for the road service guy. It was a hoot because with a mini cooper convertible, there isn't a heck of a lot of room for the full sized (flat) tire in the car, and she'd had to take her suitcase out of the trunk so the spare could be gotten to, and then when we were all fixed up I had to put the top down so she could wrangle her suitcase into the back seat. ...and no, we didn't drive home that way but it was tempting, you know Santa doesn't go about in an enclosed sleigh ;-)

About your appointment, that's good that you like this guy, I hope there's no hold up with him getting your records, etc. The holidays probably slowed the process down.

 

[sdsyd]

Hi Kim-

I'd been waiting to hear an update soon. I'll keep my fingers corssed that they come up with something soon AND that your symptoms FADE into the darkness of night.

Love,
Cindy

 

[crystalkk]

Kim,

A dr that listens and wants to get to the bottom of things that great...

 

[laurel]

Well I'm bummed out reading that Kim. I'm going to pray and think positive thoughts. And I'll have a chat with our boss mare. She always listens intently when I tell her about the concerns of people on this group and will give a little nicker, and you know animals have lots of good energy in them. All the best.
Laurel

 

[lovelily]

Hi Kim! 'PLS' doesn't sound like a walk in the park...:-( I am happy that you found a doctor you like. Prayers for a good outcome!

 

[Zaphoon]

Laurel and Lovelily, thank you for the prayers and positive thoughts!

Crystal, this neuro's first question was, "Well, you've already seen a private neurologist and a university neurologist so, what are you doing here (at the VA)? I told him, "Because I haven't gotten any answers yet." You're right, nice to have a doc that will take your case to the point of answers!

Cindy, it would be marvelous to wake up tomorrow with all of this having faded into darkness to return no more. That is a very nice thought and thank you!

There are still a lot of things to test for and a lot of things to rule out. I would love to hear him rule out MS, PPMS, PLS and MG (for just a few) and find that darn pinched nerve as the culprit. We could bring Pinched Nerve Syndrome back into the forefront of ALS mimmics.

Nice to have support from all of you!

Rose, all I'm saying is the lady in the picture is very pretty!

Kim

 

[brendapals]

Z-
I am also glad you got to spend time with a dr that took his time, and seemed to be very caring. It's hard sometimes to look at the "whole picture", so maybe he'll be able to rule some more things OUT as he reviews your medical history or orders new tests.

All I know is I'll certainly keep you in my prayers, and you know our forum family is supporting you all the way!
Never give up,
Never let up,
Never lose faith,
brenda

 

[jennibf]

Kim,
Sounds like you have a good neuro and I am hoping you get some answers very quickly!
jennifer