Status
Not open for further replies.

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,857
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
The neuro at the V.A. in Fayetteville, AR saw me for the 1st time today. I've learned that the previous V.A. neuro tested me for everything and PLS was what he came up with, yet without having done a lumbar puncture or doing any muscle biopsy.

This guy today said I didn't fit the picture the previous neuro had painted; he was expecting much worse. Even my Babinski is borderline. I asked if this could just be a case of peripheral nerve hyper-excitability and the answer was no. He was pretty taken back by my brisk reflexes. Still no clonus, no Hoffman, no jaw-jerk and in his mind, he's not so sure it's PLS but said he'll see me in 3 months.

So, at the end of the day, I got the script for baclofen for the cramps. I'm happy!
 
Glad you got the baclofen! Sooo....sounds like today was a good day with the doc-not real sure, since it seems like you're back in the "no man's land of undiagnosed" that we've come to know and love...were you happy with the doctor?
 
Kim-

Woooo-Hoooo! I think. :confused: At least you got your "cramp candy"!:grin:
 
I was happy with him but never got his name. I also got reimbursed for travel expenses (based on 2008 income). I'm sure once I update them with 09 income, I won't qualify for travel expense reimbursement anymore.

I'm not sure that PLS has been entirely retracted, more like brought into question. They are expecting me to get worse a little more quickly than I am. This plateau is a long one and this is very good!
 
Last edited:
Zaph, don't get too excited about the baclofen. Baclofen only helped Mike reduce the spasms. The cramping was reduced some but I now purchase quinine or "Leg Cramps" (a brand which contains quinine) to help even more.
 
Kim, I am happy for you. Is this a case of "no news is good news"? One thing's for sure, long plateaus are good!
 
KIm, I agree with what Judy said, Baclofen is for spasms, not cramps, but I didnt want to burst your bubble. I now use tonic water to flush my PALS tube instead of regular water. The tonic helps with clearing out the gunk from the tube too! I also put a bar of soap under his sheets. He told me to take the damm bar of soap out, which I did, but I keep sneaking it back in there. So far, his cramps have subsided. (I need to sneak the bar of soap back in there, he found it again 2 nites ago) HUGS Lori
 
Wow--- That's great news. Congrats. are you going to have the lumbar puncture done? I wonder if they might consider MS. I recall reading somewhere that your sister has MS and a lumbar puncture might help with that diagnosis, but I am sure you know that already.

Hope the baclofen helps.


Sandra
 
I was tuning for a regular customer of mine recently and she gave me a bar of soap to put under my sheets - Ivory if I remember correctly.

People that have been around me for the past few years have told me they have seen a big improvement in my ability to move around.

I still suspect this is a condition that exacerbates and remits with some symptoms that never go away (cramping, stiffness and muscle twitching).

The next appointment is only 3 months away. I'll see what the doc has to say about the lumbar puncture next time around.

In the meantime, we're still calling the PLS a differential diagnosis.

(I've tried the "Leg Cramps" stuff and it didn't phase my cramps, sad to say. Nor did tonic water with quinine.)
 
Last edited:
Hope this is good good news/................... Loads of love. Glad your patients see an improvement. HAve you felt the same thing?
 
DOes baclofen really help. Are there any side effects?
 
hi pz.
though i hate you to have pls dont get too excited at what the doctor said.
i have had long plateau periods over the last ten years,times when it looked like i was a little better..........but then the plateau comes to an abrupt end and hits you like a train.

i never had a lumber or biopsy.
sometimes i think they missed something when considering cerebellum problems,after looking into mitochondrial desease i wonder about the biopsy i never had.

we could drive ourselves mad trying to figure this stuff out.
at the end of the day with some neuro illnesses they just have to go on gut instinct and what they see.

the baclofen may take a few weeks to a couple of months to work into your system so dont expect any miracles.
the baclofen relaxes the muscles so you may find you do have less cramps as well as spasms.
i have been on them 9-10yrs now and believe me i would not be still here without them.

enjoy your candy:-D
 
Kim, make sure the test for Lyme is done if you have the lumbar puncture. It shouldn't be a problem to ask....
 
I think I've had at least two lymes panels run.

Neuro #1 suspected PLS

Neuro #2 shrugged his shoulders

Neuro #3 agreed with #1, PLS

Neuro #4 seems to be shrugging with #2.

Going around in circles with this thing.
 
IrisMarie, baclofen does work. Mike used to have about 12 spasms per hour now about 1-2 per hour. The cramps have reduced but are still significant.

Kim, I'm happy for your current status. Lets hope it stays that way or improves!
 
Status
Not open for further replies.
Back
Top