Update From Zaphoon - Page 2

CindyM · 12-31-2008, 09:12 AM

I still wish it were the pinched nerve thing, Kim. Or that at least it could be like my nameless disease - neuromuscular and not progressive. I am sorry it is not PNS. Hugs, Cindy

lydia · 12-31-2008, 02:47 PM

Hi Zaphoon,

I just read this-I am sorry to hear things are moving in that direction.

I think your neuro sounds like the type to leave no stone unturned in looking for answers. I am thinking of you-

Take care

Lydia

rose · 12-31-2008, 03:03 PM

Zaphoon,

I was thinking about the appointment you just had, and was wondering a couple of things... this neurp was with the VA, right? I wonder now that there has been more emphasis on veterans and the ALS connection, he might have given more consideration of a PLS possibility for you, than if you'd not been a vet (?) not that this is good or bad, just if your past service history was significant to him.

The other question is, where does the doctor practice when he's not at the VA? A neurologist that I've seen in the past was in a rotation at the VA hospital, I'm not sure how many weeks out of a year he was there, and also my dad saw different doctors on staff at the VA clinic he attended (non ALS related) Will your next appointment be specifically with the doctor you saw this last time? (I hope so).

Oh, about the photo comment, I definitely took it as a compliment

Happy New Year, one with answers and improvement for you I hope.

awieleba · 12-31-2008, 03:05 PM

Z~

Good luck with this and I wish you a great new year. I hope that you are feeling well this all......at least it is moving in a direction towards some answers! Pls is no picnic, but I understand that folks live with that for a long time.

warm wishes,

april

Zaphoon · 12-31-2008, 03:40 PM

HAPPY NEW YEAR TO ALL OF YOU! BEST WISHES FOR A HEALTHY AND PROSPEROUS NEW YEAR!

Brenda - The thing I like about this neuro is his willingness to dig until something is either uncovered, discovered or recovered. He did talk about the possibility of a referral to a rheumy. That is something that hasn't been done yet...

Rose - He spent 20 some-odd years in private practice and is at the VA 2 days a week. He is doing this so those of us in this area won't have to travel to the VA hospital in Arkansas. After my last visit to the university clinic (and being told by the doc he didn't have a clue as to what was causing my problems), this is a real relief to see someone willing to find out.

Jennifer & Lydia - Thanks for wishing for some swift answers. I don't mind the wait for an accurate dx.

Cindy & April - Thanks for the hugs and warm wishes!

At the end of the day, if there are still no answers, I'll wait some more! Eventually, things have either got to get better or got to get worse. You can't look very long at an ugly pig before you realize its an ugly one! (All of that "Beauty is in the eye of the beholder" crap is just a mask for not calling it like it is.)

((don't ask... it has to be those umn's at work))

lydia · 01-01-2009, 01:06 AM

Zaphoon, can you elaborate on how your doctor determined you had spasticity? This was something of special interest to me since I had been curious if the tightness/stiffness/soreness I was experiencing was related to a mild manifestation of spasticity. I have seen (and I am blushing as I write this) videos on you-tube where doctors demonstrate what spasticity looks like (but to be honest, what can you tell on the tube..?) and expected my 2nd neuro to at least do some sort of range of motion movement with me....but I got nadda. So I continue with hamstrings that feel like they might rip and an elbow that is only happy when bent & motionless.

Take care

Lydia

Zaphoon · 01-01-2009, 11:27 AM

Lydia,

I thought about answering you via PM but thought that someone else may have something to offer on this as well.

Spasticity is an involuntary tightening of the muscles (legs, arms, back, neck, etc.). It can vary from a mild sensation of tightness to a jerking of the muscle. In my case, this summer, my muslces in my back, neck and legs were so tight that it took me 5 minutes to manuever out of bed. This lasted for several weeks then let up. Because the spasticity exacerbated and then let up (but didn't go completely away), I believe my condition may or could possibly wind up being diagnosed as MS. The confusing thing about this for me is that I had a clean MRI in July when my spasticity was at its worst.

Okay, having said all that, my new neuro did comment that hyperreflexia and spasticity often go hand-in-hand. If you are hyperreflexic, you are probably spastic. My guess is that my 2 frozen shoulders can be attributed to spasticity. I do know this - spasticity can make you feel weak. You may have strength in one direction of motion in a limb but feel weak in a different direction because of spastic muscles. This has been my experience. Somebody may feel free to correct me on any of this, if they please.

As far as how the doctor determined spasticity, I suppose it was a combination of observation and touch. He had me do some basic movements (walking, arm waving, etc) and I know he felt the tightness in my lower back. I think if you have spastic muslces, your doctor should be able to tell you just from some simple observations. Again, someone slap me if I've gotten any of this wrong (for Lydia's sake and mine).

One other thing - I seem to be pretty much in a constant state of spasticity in my calf muslces (they have a feeling of crampiness constantly) and my lower back is always tight. I wonder if this is the norm for anyone else.

Hope this helps Lydia and I'm sorry you are experiencing any of this.

Zaphoon

crystalkk · 01-01-2009, 11:58 AM

Zaphoon,

MS- is difficult to dx also and you have to meet certain createria for dx.
Clean Mri's doesn't mean no MS- you did say that you talked about spinal tap.

Keep your positive outlook and sense of humor -best medicine in the world.

Happy New Year!!!!

rose · 01-01-2009, 12:03 PM

Spacity...

To add.... as it was explained to me, hyperreflexes cause spacity, it can also be seen as mis-coordination and slow movements. Like inability to tap toe to music.... I've developed an almost complete inability to thread a needle. (don't laugh) its not my eyesight, I can have my contacts in, bifocals on top of that, be able to see perfectly well, but can't maneuver the thread through the needle's eye. I have trouble even getting it to go through the little wire loop thing on a needle threader. But.... I can crochet without trouble. So I guess different movement involving other hand = different signal from the brain? Can't explain it. I've also lost range of motion, reaching behind my back more than any other movement (and no, guys, we're not going to ressurect the bra theme here LOL).... so I think that the movement inaccuracy is the spastic part, and the stiffness and lack of range of motion is the hyper part. but they go hand in hand together.

Sure hope I'm not wrong about all of this (I'm sure Wright can "right" me) would hate to start out the new year with a badly stated post!

crystalkk · 01-01-2009, 12:11 PM

Rose,

Love the new picture and the leopard coat.

Has anyone heard from Beth-u she hasn't posted since all that crap....I hope she is OK.

Zaphoon · 01-01-2009, 12:14 PM

Crystal,

PPMS, I am told, often evades MRI (doesn't start in the same place as typical MS). So, I know in that respect, you are correct; a clean MRI doesn't necessarily mean no MS.

I feel for the neuros who have to try and do the diagnosing of anything neuro-muscular.
I really feel for anybody having to go through the process of diagnosis of anything neuro-muscular. And, I feel for those paranoid of having ALS who thought they saw a twitch in their pinky or a tingle in their tongue.

Anyway, it is just plain good to feel at all! Right?

Hey, here's one for you? Which monster is meaner, MS or PLS? I've seen first-hand what MS can do and have read (from a lot of you) what PLS can do. I vote they are equally mean. So, having answered my own, dark question, there is no need to open that can of worms any longer.

I had a very nice breakfast today (fruit salad, scrambled eggs, bacon, biscuits/gravy and my beloved beverage of all - coffee!!!!!!). What a wonderful way to start off the new year!

I resolve to be nice to all (unless emotional liability kicks in which would then automatically take all liability off of me for breaking such a resolve) and nasty to none!

I'm off for another round of breakfast (brunch at this hour - still too much left)!

Zaphoon

rose · 01-01-2009, 12:15 PM

I've been thinking that all morning, I'm going to send her a message. She's my hero.

Happy New Years!

(btw the leopard print jacket goes well with my leopard print cane - seriously)

Zaphoon · 01-01-2009, 12:23 PM

Rose,

Beth is my hero, as well,

Regarding threading needles, spasticity, hyperreflexia and such, I have been dropping things a lot lately; especially little things (small parts and pins, etc). This, after reading your post, I believe is a coordination thing gone bad. Then, of course, I have to bend down to pick whatever it is I've dropped, up and when the "Gumby" in you is gone, all I have to say is "shucks".

I think you may have it right.

Zaphoon

sdsyd · 01-01-2009, 12:35 PM

Funny how thoughts of you all happen regularly. We rang in the New Year with our friends- Kim, Karen and Katie.

WHATEVER is wreaking havoc with you- Kim - I know you will not give up. I don't know the lesser of the two evils you are talking about. All I know is you've got some friends and are not alone in facing your monsters.

Love,
Cindy

Zaphoon · 01-01-2009, 01:15 PM

Cindy,

Thank you for the wonderful encouragement and I really love your signature quote!

Kim