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irismarie

Very helpful member
Joined
Nov 21, 2009
Messages
1,386
Reason
PALS
Diagnosis
05/2010
Country
FR
State
tarn et garonne
City
valeilles
Right! Got there in wheelchair to find three HUGE steps up to the building with no ramp. REmind you this is to a neurologist! Once inside I find the doorway to the toilets is too narrow for wheelchair access. On finally being called to the man's office, his chairs and table have to be moved to enable the chair to enter!
The tests were horrid as everyone here knows but some were beyond an acceptable pain level. I am normally a brave soul but I shouted out! "Oh", he says. "That's unusual for it to hurt like that".
Finally he decides that my EMG is distinctly abnormal and that the nerves are lost but he does not see that it could be ALS as:
1 - I have not lost any weight (I eat as much as ever and do not move so any weight lost in the leg would be more than compensated - and this has lasted just nine months)
2 - He did not discover any fasciculation.
3 - I have no real pain apart from cramps

From all I read here those do not seem v valid reasons?
When I asked what else it might be, well...........wait for it.........it could be viral
Viral? Starting with a dropped foot and no illness otherwise and gradually spreading till the leg no longer works and the other leg is half way there and I can feel the weakness in my arms even if the .EMG showed nothing - yet.
Don't get me wrong. I'd be over the moon if he could have shown me it was NOT ALS. But this man was a joke and "earned" 160euros in half an hour.
Irismarie, cross.
 
Sorry to hear about this experience. I am confused. How can EMG be "distinctly abnormal" as well as "showing nothing"?

Was this an ALS/MND specialist? Dani
 
sorry! the emg showed nothing abnormal in the arms yet. The nerves were gone in the feet/legs, where the illness started<;.
He was yet another "neurologist". I think the nearest ALS specialist clinics are in Toulouse and BOrdeaux, both about 2 hours away........
 
oh...so awful-all of it...Web also thought the testing was horrid and refuses to hav it ever done again. What can I do to help you? Is it like here where you have to have the diagnosed of ALS to get services? I am soul sorry that it was horrible and gave you no answers.
 
I agree w the others. All research shows that progression is a mystery and does not have to keep any certain pace. Not to mention that ALS/ MNDs present so differently from person to person. It breaks my little ratty heart that we can't just fly over there. -JK
 
JK, get those novels finished so we can get over there! xo
 
There are so many things about your post that bother me. It is quite normal for the test to be painful. Many people vow to never again go through them after the first one. How can a nuerologists office not be handicap accessible? An of your three reasons I find #1 and #3 to be completely illogical! I'm so sorry. After hearing of his incompetence I question his ability to even read the emg results. I'm so so sorry.
 
Well I saw my neoro specialist this pm and she more or less dismissed what he - the emg idiot - had said. So hospitalisation and another lumbar puncture Thursday to exclude the last possible "other thing" then they send me to Toulouse where there is an ALS centre of excellence. At least she had the guts to admit that she did not see enough cases of ALS to know enough to help me. Gradually getting there, though don't ask me where!
 
These are fright stories.... So sorry for what you are going through. I hope and pray that it is something else... It is almost worse not knowing what it is? Thinking of you. Linda
 
OMG Iris Marie, we lived almost the same journey today! (Minus the wheelchair issues, as fortunately my husband is still walking), but another EMG/NCT test done today (3rd in 6 months), and this one was by far the most uncomfortable/painful to date. This specialist stated his NCT was definitely abnormal, but his muscles did not show up as damaged in the tests today. We have to wait 4 MORE months, watch him lose MORE function and then RETEST again. If there is progression and everything else is negative (everything else has been to date), then we'll discuss confirming ALS. Understanding that the "muscle wasting" doesn't start until it is no longer receiving any signals from the nerves, he is basically too healthy...crazy, huh! We were given a verbal "this looks like ALS" diagnosis 6 months ago, but no one has yet to put it in writing- just the MND diagnosis...our primary neurologist actually said that they hesitate to document it because it's such a horrid diagnosis, they want to be ABSOLUTELY sure. To which I said, then maybe it shouldn't have been put out there for us so quickly-but-it's too late for that...

We are in total agreement with your feelings and Linda's...Something else would be amazing, but this "no man's land" is incredibly frustrating and stressful.

Hang in there IrisMarie-you've been in my prayers!
Peace,
 
Hi,
Well Larry went to his neuro today first time since we went to the university of il in chicago where the neuro thought myasthenia gravis ,but testing 2 single fiber emg's & a reg emg proved that it wasn't mg,so now we are back to his reg neuro who after my asking is going to do another mri of the brain,i definetely want him checked again for ms it's been 3 yrs & still no diagnosed .the doc wants us to think about ivig but i am very concerned ,the cost is terrible & i know there are risks .I also need to ask the doc how that works when they pool the plasma for the ivig Larry is o neg & i'm really not sure if that is a problem .I know that oneg can only take oneg blood but don't know about ivig,my mind is going crazy the doc said that he can see how thin he is & how much muscle he has lost,the doc in chicago didn't think his reflexes were that bad & today when he did the test his legs fly like they always have for the past 3yrs.so I don't know what she was thinking.well hopefully we will maybe get some answers.God Bless everyone.
Sharon
 
if only these so-called doctors could read these posts!Maybe we should print a little booklet without names and send them all a copy. Or send it to "Lancet" or another magazine for doctors. but no, such people are so arrogant they would not change. So it is we who must change and CHange to other doctors. The woman neuro I saw yesterday, by ADMITTING she did not know enough and would send me to a centre of ALS excellence, was wonderful. WHy can those others not realise they are dealing with human beings and noT NUMBERS?
 
Melody, just wanted to comment on the test results. A bad nerve conduction test with a clean EMG would tend to point towards something other than ALS, which would really be a good sign. I know it is hard to be in limbo without a diagnosis but this ominous possibility hanging out there, but it sounds like there is still reason to hope for something else. How is your husband's progression? I remember a while back you said he could do fewer push-ups, does he ever try those any more?
 
Hello Good People! I feel bad that you all have gone through so much. :sad: If you get really desperate, there is always the good old muscle biopsy. It can tell so much more than an " EMG ".

The best to you all, as you search for your answers!
 
hi lovelily,
Larry had a muscle bx & they still can't give a diagnosed of anything,so he is still in limbo & not getting any better his progression has been 3yrs.He looks worse to me in the last 8mos.Like I said yest his doc is going to do another mri of the brain to check for ms.God Bless.
Sharon
 
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