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Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Hello guys whatever you do ,do not take to the bank when a doctor makes an assumption . We all tend to put them above us ,this is a NO NO . They know VERY VERY little about PLS ,and none should tell you, your going to change to ALS without basing this on Factual evidence . The only way they know when your changing is through those EMGs this tells if the muscle is dieing based on no electrical signal getting to the muscle .Being that the muscles need constant Stimulation from the Brain ,when they do not get this the Muscle Atrophies or deteriorates .Some confuse Muscle weakness with Atrophy ,not neccessarily true . Alot of PLSers have Stiffness and Incoordination which could be construde to be weakness . When your a PLS patient and someone tells you that you may progress to ALS ,you immediatley think your going to die ,THIS IS DEVISTATING to say the least then people start wandering why your crying and angry
So when a doctor makes a statement he or she has no facts to back it up .find another doctor . I personaly have been to over 20 in 7 years . Geo
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Geo,

From what I researched weakness can be both an upper or lower sign. I don't know how they can tell the difference. The only thing I can think of is through an EMG. Do you know anything about this?
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Crystal .I have no weakness ,with PLS weakness is not usual .Where did you research ?CIDP,MMN, ALS, SMS , MS, Deminlinating Diseases have weakness as no stimulating signal from the brain gets to the muscles as the Milen sheath deteriorates(MS,CIDP ETC ) . In a demilinating disease EMG will problably show low signal ,in Amyotrophic Lateral Sclerosis no signal once the Neuron dies either Upper or lower .The Nerves are like wires and the EMG is like an OHMETER/VOLTMETER when they stick that in the muscle ,it will register wether theres a signal there and they start as you know at your feet and work theyre way up your spine to your tongue
This i garranty you will bring tears to your eyes . Ive had 4 EMGs , NCV nerve conduction velocity is used i beleive for detecting Demilinating Diseases. Milen Sheath is like the coating on wire ,if this coating comes off ,part of the signal gets lost or slowed . There are lots of Central nervous system diseases that have alot of the same symptoms . I like to Google Things like i'll put in Central nervous system disorders , or weakness in the upper muscles ,it will give you several hits to pick from .or for that matter EMG Geo
 

etchick

Member
Joined
Mar 5, 2009
Messages
11
Reason
PALS
Diagnosis
01/2002
Country
US
State
TN
City
Seymour
Hi! I agree with you that doctor's are somewhat clueless about rare diseases like PLS. I wish that I had been more informed when I first started having symptoms (about 17years ago). The doctor's acted like it was none of my business about the EMG so I just know the final results and not the details. I have been told before that I have Friedrich's Ataxia by one doctor. After another MRI was done and read by the second doctor I was told that my brain was not shrinking and that I did not have FA. I said to the second dr. that the first MRI proved I did. And he said that MRI's are very subjective and open for interpretation. Further this doctor said that he "thought" it was PLS/HSP but he couldn't give me a clue to the prognosis. All said, I don't think I am dying. Excercise has helped. Maybe for only my high blood pressure and mental outlook. Thanks for listening to me ramble.
Alisa
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
rambling is okay with us!

I'm happy that you're 17 years and counting and still doing exercises - that's fabulous
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
dear george,i have to say i love and have missed your delightfull posts.

no,doctors are not gods though some like to think so.
my neuro (from the old school and ready for retirement)openly states medical science has only scratched the surface with regards to the brain,they know only little.

yes, you do have weakness with hsp/pls though its different to the weakness/paralysis of als.
umn weakness is caused by spasticity taking its toll on the muscles,the constant spasms and stiffness weaken the muscles but not causing the damage lmn does.

i do now have atrophy but feel it is from disuse(that is my left leg/foot )
however i have asked about a emg and may have one but i honestly think it will be ok.

thankyou geo ,please dont leave it too long to your next post,you have been greatly missed.:-D
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Caroline, I think you missed the date on Geo's post. It is 2007. The good news is that he was here today.

AL.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
ooooppppssss:oops:
sorry,i saw geo on yesterday and automatically thought it was a new post.
please post soon geo:grin:
 

Craig Mattice

Member
Joined
Jan 18, 2009
Messages
16
Reason
PALS
Diagnosis
10/2005
Country
US
State
VA
City
Richmond
I'm being thrust back into the "monitor thy neuro" syndrome again, especially since this new neuro, whom I like and appears to know his stuff, has entered the picture.

I just received his notes from my last visit and I'm seeing generalized and nonspecific comments being written. i.e. "patient has been followed at this office by several other providers." Make that three before him. My original neuro left the practice for the lecture circuit, I was not at all impressed with his replacement and requested a change after about a year, and have been seen regularly and treated by an outstanding Adult NP with neuro specialty.

He also mentions course of care and questions about my presentation of stroke, use of TPA and negative MRI of supporting evidence of infarct. News to me. So tell me doc? What do you think really happened. I don't think I would get a very substantial nor accurate answer.

So, no, doctors are not in any way supreme beings with total knowledge of their specialty. Question everything, even confirmed diagnosis and do your own research. Just don't make the mistake of taking your research too seriously as there is a lot of incorrect info on the internet even in the med sites. Doctors are only making the best guess with what tools are available, although, things are advancing rapidly and in the patient's favor I think.

Just some of my observations.
 

perplexed

Active member
Joined
Nov 28, 2008
Messages
70
Country
CA
State
Quebec
City
Montreal
Absolutely, QUESTION, QUESTION, QUESTION!

Craig and Rose, you are 100% correct to stick to your (respective) guns and question, nicely but firmly, if you feel you need or want more information from your doctor, if there is anything that seems unclear or confusing, or if you disagree or would like more info on which to disagree. If a doctor is not on your side regarding the giving of information - if they seem impatient, patronizing, soothing but not helpful, they may still be right but they may not be, and their attitude is not acceptable. My reaction to medical professionals who are patronizing-but-unhelpful is to ask how they would appreciate being treated in a similar way if they went to, say, an attorney, or if they were out of the picture and a family member was being treated by a physician the way they are treating you.

You probably won't link me to my other recent thread, but the reason I have much grist for my mill is that my husband was misdiagnosed by two neurologists in the fall and in January) both of whom were convinced he had ALS (or one was - the other was convinced it was at least a MND). In fact, he has oral cancer, has had it for at least six months, and had he been diagnosed correctly at the outset, would not now be in an advanced stage with a very different prognosis. He lost at least three months of early treatment. The neurologists have each not contacted me (probably too busy conferring with their lawyers) but their arrogance and patronizing care is making me so angry I am literally shaking. I had been saying since the outset of my husband's symptoms that MND did not add up, but they put me in the "wife in denial" category and never questioned themselves, despite good reasons to.

This background is just to give at least one anecdotal reason to question. A good doctor really listens to the patient and internalizes the rational questions to their medical treatment and diagnosed. A good doctor looks outside the box and asks not only, "do any other tests need to be done," but "were the correct tests done correctly and were they in addition read correctly?" All these tests are only as good as the person conducting and reading them.

Don't ever let a medical professional allow you to feel silly for raising a point, getting angry if they are not listening and disregarding your questions. As Dr. Spock said about child-rearing, I say here about our own cases or those of relatives; you know more than you think you do. Trust your instincts to question.

Many of the posts I read are those of people with atypical cases or symptoms, conditions presenting atypically, or unclear-as-yet diagnoses. Which tells me doctors are not omniscient and have no grounds on which to ignore patient input or queries.

Keep up the good cheer, do good research, and ask any questions you like - of them and on these posts.
All the best,
Perplexed
 
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