Status
Not open for further replies.

reebabs

New member
Joined
Jan 19, 2012
Messages
9
Reason
PALS
Country
US
State
MI
City
Grand Rapids
1. how long do your neurologists take to respond to phoned/questions in between appts scheduled 3 months apart? (mine has taken 2 weeks + more than once, don't think this is right)

2. I have random twitches that are not visible. Is there a difference between twitches with ALS and those of PLS?

3. eye muscle feels sore occasionally when moving eye into peripheral vision. have already been checked by ophthamologist and there were no concerns. Are eye muscles affected with PLS?
 
undiagnosed with pls.. made me chuckle.....gotta warn you, u is gonna get shot down in flames...good luck....pooler
 
clarifying....those are my questions that are not being answered by my neuro. by phone... at last appt, I pressed for a diagnosis to explain why I cannot walk, he gave me very litttle explanation/info besides probably pls. I didn't know what that was so did not know what to ask.

(Other symptoms for one year: weakness in leg, difficulty walking, he observed spasticity in leg. right arm and tongue are tingling, knee reflex brisk.)

another question:
my knee reflexes have been brisk for 30 yrs. no one ever told me that was abnormal til now. why is that suddenly a diagnostic indicator? have I had this for 30 yrs?
 
after that appt, I scoured the internet to understand better, from scholarly articles, to posts on this forum. Got more scared and confused. your post, about 3 A's of upper motor neuron helped me a great deal, had not seen that explained in that clarity. Thank you.

Neur said "probably not" ALS, but his non-explanation was not enough. (hence the non-diagnosis.) I think he knew for 6 months and never said anything. He was talking in code I did not understand...said early on, your muscles are "tight" prescribed muscle relaxant and out the door.
 
Hey that the same thing went on with me it has been 13 months that i have not been able to walk i stop walking in less
than two weeks after i felt shimmering in my legs from my hip down i have know stenght,knees shift alot to the back were they same to
lock. seeing my 3rd neuro she is going off what the past neuro said pls so she up dosage on baclofen will see me in 3 wks.
 
out side of a neurological exam, what kind of diagnostic test have been preformed and what type of results did they find?

PLS is diagnosed by the process of elimination, and even then its still a probable guess. Have you had an MRI of the head and spine to rule out things like MS? What about an EMG/CVS?
 
I have had a head and spine MRI and they were normal except a very tiny white spot 2mm on cervical spine. he wants me to repeat MRi there in March to watch it. The written report said it was normal but another dr looked at it and said it might be something significant.
I had an EMG in Sept that was normal.
 
reebabs....sorry i chuckled...i leave u to the more knowledgable on here to advise you...hope all goes well...johnny
 
Aly knows more about MS then all of us but I was thinking when you said that your eyes hurt to move them, it seems I had read somewhere at one time or another that a sypmtom of MS was that. I could be really off base though. That is why I asked about the MRI's. I would wait and see what happens with the next MRI.

Anyway to your other questions, tingling is not a part of UMN as it is sensory issues. Could be a pinched nerve or something else.

I had brisk reflexes for years also, as well as the spasiticy and weakness, even though lots of docs saw it, not one of them said it was pls they all said they didn't know what it was. It wasn't till 09 before a new neuro said possible pls. Now I have been dealing with this going on 20 years. Most docs do not know about pls. Now I am being treated for pls, its all a guessing game.
 
What exactly was the PLS diagnosis based on? My understanding is that it takes years sometimes to officially diagnose. Brisk reflexes can be normal for some people.

For me, my doctor ruled out MS with a brain MRI. Other than LMN signs in both hands, all my signs and symptoms are UMN, including Babinski, hyper reflexes, spasticity and horrendous cramps, joined by hypertonia in both legs. And after a year, I still have no official diagnosis. Last visit was 'probable' ALS...though all my UMN issues continue to progress and my right arm is now starting to atrophy and joining the left that is wasted to nothing.

We are still ruling out spinal issues, nerve issues, and whatever else they are thinking. In essence, there is no effective treatment for ALS or PLS. PLS has a much better prognosis, of course.

It can be a while to get an official diagnosis, but symptoms can be treated as they occur. For example I'm on Baclofen for the spasticity, and they are going to increase the dosage as its not working as well. I take pain meds due to the pain issues I have from nearly constant spasms in both legs. I use a BIPAP because of daily headaches and low O2 sats and FVC. No cure and no diagnosis, but at least they are treating symptoms. It's a waiting game, unfortunately.

How have they ruled out MS? The spot on your spine could be a lesion, correct? Not everyone with MS has brain lesions, and there are other things to test for it, such as evoked potentials and a spinal tap.

Your vision shouldn't be affected by PLS. it can be in MS, but Optic Neuritis should have been found by the eye doc.

As to how are questions answered, my neuro generally answers within 24 hours when I email her.
 
dr said: the brisk reflexes and spasticity were what led him to believe it was a "spinal cord disease" he's a specialist in peripheral nerves, I am traveling a distance to see him and people come from all over the state to see him. I think he teaches at U of M neurology. I would think he'd know what is causing the tingling in arms, but I was really convinced by self diagnosis that I had progressive ms. He said I don't have it. however i'd read that 5% of MS patients have normal mri's in the beginning so if he is basing it on one set of normal mri's, I don't know what to believe. I guess either way PLS or Ms, I still am losing ability to walk. I am on Baclofen and so far not helping. getting sad that I think its moving to my other leg. It is a lot of emotions right now. what ever it is. I have just scheduled with dr pioro at cleveland clinic in 3 weeks for another opinion, he seems to have written a lot on ALS. Have decided to not return to that neuro as he has no relationship skills. I will ask a lot more questions at the next dr. I am in the first month of learning about PLS/ALS as a diffential diagnosis for me and I'm scared a lot. thanks for responding.
 
So sorry that it feels like your symptoms are progressing.

A second opinion is wise with such serious issues. I hope you'll find the new physician much more personable. It really does make a difference. You should have someone with whom you have a good rapport.

Good luck at the C Clinic.
 
reebabs - So sorry you are having to deal with this. Try to take life one day at a time and remain as active as you possibly can. The plus side of PLS is that it is not immediately life threatening. Initially, I had a terrible time reconciling myself to the idea that I have to be dependent on others to do ordinary, every-day tasks such as running the vacuum cleaner, mowing the lawn, or driving any appreciable distance. I had always been the person who took care of others--not the one who had to ask for help myself.

My diagnosis was based on two completely normal MRIs of the head done about a year apart followed by an EMG that showed no evidence of lower motor neuron disease, although I am now experiencing clumsiness with my hands. This process took about 2.5 years. I have back problems but, to date, have been unable to persuade anyone to do an MRI of the spine. Three years ago, the only limitations I had were occasional weakness and pain in my right leg and slurred speech when I was excessively tired. Now my ability to speak is virtually gone, and I have to use a rolling walker all the time.

I have been referred to the teaching hospital in my state and am scheduled to attend the ALS clinic there, which takes place every three months. I have emailed the neurologist in charge twice with questions and haven't received an answer. I'm still trying to figure out how the system works. One neuro told me she knew very little about PLS and neither did anyone else, including the neuro in charge of the clinic where I have been referred, even though he is reputed to be one of the experts in the U.S.

Hang in there, and good luck.
 
thanks. I am doing as well as can be expected. I will want very much to stay active. I had a lot of sadness last time I rode my bike, thinking about the prospect of losing the ability to ride. I had a back brace in high school for 4 yrs and my one hour a day out of it was spent on a bike, and it is the single most symbol of freedom and joy for me still when I ride. but I realized my husband and I could buy a tandem and prolong the riding. And thereafter, could still kayak, or buy a good camera do more photography. So those kind plans help me get through the sense of losing recreation. I think the hardest thing about this, is being a mom, with a limited budget, for me has been built on delayed gratification...vacations etc, as the kids activities/costs etc keep my needs to a minimum. I've gotten thru difficult times because of dreams. Kids needs come first. So I've lived with the hope of having more freedom to do more travel and recreation in the future. So I think this is what makes the loss of ability a big grief to go through for me. I know I'll adjust, but my dreams will have to change. Last yr I turned 50 and after 5 yrs of failed attempts, did go do my dream trip snorkeling in the Florida keys. And I probably can get one more big trip in this summer that my family will accommodate. I am thankful for this place to talk.
 
rebabs.....u know wat they say...neurologists never seem to find a cause,, and wen they do they aint got no cure....so u gotta put a smile on yr dial and live with it....for yr family and yoursen.......sit too long and getting up is a pig...so dont sit too long...make yoursen walk...as best u can...force it somewhat.......cos if u dont u will be in big trouble sooner.....use if or lose it.....enjoy the battle..its all u got....lifes a *****...but so what......the pooler.
 
Status
Not open for further replies.
Back
Top