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lhagsjr

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Why is it so inconsistent? Why when some people walk into a Neuro's office does he know right then and there it is most likely ALS? Why when a neuro performs an EMG on most patients can he tell right there its ALS? BUT then you hear other stories like: Lorie's brother went 7 years? Is is just the quality of the doctor you see?

My neuro, and I have one of the best in the country, tells me to absolutely get ALS out of my head. He states my EMG is totally clean for ALS. BUT, why do i have atrophy in my arms/shoulders? Why do I twitch? Why do my shoulders pop and crack everytime i move them? I know for a fact my arms have gotten smaller. The answer I receive from my docs, I dont see the atrophy and twitching is benign. I truely have nowhere else to go. I do have a biopsy coming up but its to see if I have a myopathy. Not even considering ALS.
 

paula B

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I can only speak for my case. I think by the time i went to doc it was so obvious to him what it was,,,meaning,,it had progressed so much. I had diagnosed first visit to neruo.
Hpe this helped.
PaulaB
 

ltr

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Even if they are looking for myopathy and not considering als, if you have it then it will show up on the biopsy.....right away. Myopathy and als mimic each other with symptoms, so you could possibly have a myopathy. It's much better than als. Hang in there until your biopsy, that will probably give you answers. Good luck~Leslie
 

Jamiet

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You all have great points...... each one true in itself.

The reason we have all these points is....: There is no " single conculsive / non-conclusive test" for ALS, this problem, and it's this problen that opens the door to the many issuies in diag. or not diag ALS in a person..

I woud say, for staters, they should treat eack SUSPECTED person, with twtches / Cramps / muscle atrophy (slight) or weakness (slight) ASSUMING they have ALS. Then, attempt to eleminiate it, quickly, one by one.

We need to have a test poeple, a one time "quick" test for ALS...YES or NO..you have it or not......and a test will be subject to the stubstant or the reactoin that it causes ALS. Until this is found...we will stay status quo.

Until a good test is found, means we don't know what where fighting. We're only managing good, but that's on managinging a bad situation.... there is no way to manage a really bad siuation like ALS, into a good situation without knowing what the cause is. So, what we need, we need the test......to identify what ALS is / or what it's casued by. when we find that, ALS will be like MS.

You have to realize, if we doint don't find the cause, it will be very tought to have to fight ALS.

Rgds,

Jamie
 

hermit

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Hi ,i higly agree with you on this i am a suspect!with one neuro dc and another confirmed that i have parkinson disease so its compilcated to bare all of this and have no one to talk to about it:cry: they are really trying toproove to one another who is right?hope someone could give me some tips ore storys ?i am a litle alone in this:?:
thank you hermit
 

Al

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Hello hermit. You say that one neuro suspects Parkinson's. Does the other one suspect ALS? If so neither is a good disease to have. I hope they are both wrong but welcome anyway. There is a Dr. Cashman whom I believe is still working on a blood test for ALS. He is in B.C. Canada. I haven't heard about his research in a while. Has anybody else?
AL.
 

circa90

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same boat

hermit said:
Hi ,i higly agree with you on this i am a suspect!with one neuro dc and another confirmed that i have parkinson disease so its compilcated to bare all of this and have no one to talk to about it:cry: they are really trying toproove to one another who is right?hope someone could give me some tips ore storys ?i am a litle alone in this:?:
thank you hermit

hi,

firstly can i say what a wonderful site this is,so many questions and answers an absolute gold mine to all Als sufferers.With regards to pre-diagnosed Als,until today i had never heard of this crippling ailment,however after suffering recently from limb tremors,restless leg syndrome,night sweats,chronic fatigue,excessive mood swings and now a tongue that twitches for England so to speak,and very sore due to the fact that swallowing hot coffee/tea is becoming less easy day by day what is one to do.I have a neuro appointment in 4 weeks.The trouble being is that i find that most neuro diseases have the same symptoms as the rest resulting in mis- diagnosis i think you will agree that most people have only one chance to get the diagnosis right so making life that little easier to comprehend. so the question still begs to be answered what is it i have.

kind regards (circa90) GARY,FROM DEVON UK
 

CindyM

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Hello Gary. Welcome to the forum. I hope they will be able to tell you what is going on with reasonable certainity and reasonably soon. Good luck and keep in touch! Cindy
 

circa90

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Thanks

Thanks for the welcome cindy,its nice to meet you,
Gary
 

Al

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Hi Gary welcome. Hopefully your Neuro is well versed in the MND's as you call them over there. We have found that not all Neuro's are of the same quality. The ones seeing a lot of ALS patients usually are better able to interpret the various test results and hopefully give you a diagnosis whether good news or bad. Good luck.
AL.
 

circa90

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Hi Al,

Good to meet you,The trouble with the Uk is that we currently have quite a few doctors from member councils from the european union ,unfortunately not trained or have enough experience to handle such ailments as als,ms,or even parkinsons,mis diagnosis is quite high here.
 

hopingforthebest

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lhagsjr said:
Why is it so inconsistent? Why when some people walk into a Neuro's office does he know right then and there it is most likely ALS? Why when a neuro performs an EMG on most patients can he tell right there its ALS? BUT then you hear other stories like: Lorie's brother went 7 years? Is is just the quality of the doctor you see?

My neuro, and I have one of the best in the country, tells me to absolutely get ALS out of my head. He states my EMG is totally clean for ALS. BUT, why do i have atrophy in my arms/shoulders? Why do I twitch? Why do my shoulders pop and crack everytime i move them? I know for a fact my arms have gotten smaller. The answer I receive from my docs, I dont see the atrophy and twitching is benign. I truely have nowhere else to go. I do have a biopsy coming up but its to see if I have a myopathy. Not even considering ALS.
Saw your post is from Philadelphia? My husband sees Dr. McCluskey at Penn and a local neuroligist in South Jersey. He started year ago muscle wasting in both shoulders and his arms are very small now and having difficulty with dressing etc. The good news is, no problems with his legs! Yeah! Right now, his diagnosis is MMN and he receives monthly IVIG treatments.
I am the one going crazy! He is trying his best, still working, 57 yrs old, and keeps saying "next year I will be able to do that again". I work in the medical field so I see things all the time and a little knowledge is sometimes scary.
I wish you luck and hope you get some answers to your questions. When I cannot sleep I check on this site. It is a wonderful tool for such a sad disease that has no cure yet. But as my husband says about "everything" MAYBE NEXT YEAR! We all pray.
 

MtPockets

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Hopingforthebest, I'm not that familiar with the disease they are taking the biopsy to check for myopathy. I would make sure they tested it for motor neuron disease at the same time, if they are different tests.

I know I had a biopsy about a 18 months ago now and it showed definite motor neuron damage. I have since lost 50% of the muscle mass in my legs and now it is moving to my arms.

Maybe they check for both, but it doesn't hurt to ask them to be sure to check for both. After the test, it may be a good idea for your own information, to get a copy of the biopsy lab report for yourself. I know the Doctor will tell you the results, but I prefer to get a copy of my own medical records when it comes to tests. Some times there are things that show up in the tests that they do not tell you about.

For example I had a heart catheterization done and did not know during the process I had a heart attack, until I got a copy of the report. No one told me. That is something I should have been told I would think.

I hope you get some good reports from the tests.

God Bless
Capt AL
 
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