UMN Dominant ALS

[Geo]

You need to find a new Doc. Sounds like to me 2 EMGs and still fine . I had one that said ide be dead in 2 years . I have 9 yrs. sir . Quakes ,otherwise she would have suggested a second opinion . Geo

 

[Geo]

I forgot to mention, if your Doc. was or is sooo Great ,he or she would not hesitate on recommending a second opinion ,now am i Right ?
If your the Professional and you have no real answer you would not hesitate . Otherwise i see it as ERROGANCE . Geo

 

[Zaphoon]

Betty,

Your muscles can be atrophying due to disuse/underuse. It could also be that there is LMN trouble going on but evading an EMG (possible - not probable).

I have muscles that have atrophied, too. It wouldn't surprise me if I should wind up in the same canoe with you.

Hey, since PLS is supposed to be so rare (1 in 10 million by some accounts), lets just hope it is a wrong diagnosis to begin with and we really have a minor short in our wiring. Next visit, tell the doc to get his ohm meter out and check for resistance!

PZ

 

[BLPhill]

Hey Zaphoon, what is an ohm meter. That Dr was the second opinion. I pray to god she is wrong and I hope she is.

here is how it went, I went to my GP and he said probable ALS. He then sent me to a diagnostics clinic where the dr doing the emg put in his report " strongly suggestive of PLS", patient does not show typical signs of ALS. This was in Sept08.

movement disorder specialist at a university hospital said also probable PLS.

next, ALS specialist at a different hospital, not knowing about the first, said " PLS form of ALS. The reason I never went back there is, I didnt like his bedside manner, also, he wouldn't speak to me only my daughters. Forget him!

Next dr, neuromuscular specialist, at same university hospital. More blood tests, a bunch of them. (CK 231) He sent me for another EMG, it was the same as the first. This one in January 09. This DR said the same, PLS. (neuro muscular specialist) He then refferred me for a second opinion at same university hospital.

This neuro, after her examination called me and said UMN ALS, She said she consulted with her other neuros and the all agreed with her diagnosed, due to rate of progression, visible fasciculations, and also thinning of left arm and leg. Also, another bunch of blood tests. This time CK was 259 which she said was the high side of normal, she put me on rilutek.
This is a neuro with the MDA/ALS division.

Yes, I so hope that the drs who said ALS are wrong. Are there any other PLSers who have had this the same length of time whos speech is all but gone, the legs as well? The first DR who did EMG said in his report that the test was indicative of MND, the second one was the same.

Betty

 

[BLPhill]

Do you guys think that I still have reason to hope for PLS? Zaphoon, I hate to say it but I think you were wired wrong from the get go!:-D

 

[hopingforcure]

I would say it could definitely be PLS, and you could definitely be one of those people who are just in a land of just who knows. I know you can have fasiculations, and if they are not shown in an emg they can be from your basic UMN problems. I have atrophy, fasics, and such but I am a very very strong UMN dominant. I think I fall somewhere in the same place as you do. If your emg's were not indicating of ALS, well then I would say you should take that as a real positive. Many pls'ers say they have slurred speech, hang in with us.

 

[Zaphoon]

Betty and Hoping,

I have experienced problems with my speech getting weak and gravelly but no slurring. There are fascics in my legs all of the time and my latest neuro says it is due to the UMN stuff going on (given that my EMG was clean 15 months ago).

As previously stated, there are also muscles that have atrophied as well (but again, not due to LMN stuff).

So, until the EMG proved otherwise, in the beginning it was pretty scarey. My picture presented itself something like this: ongoing weight loss, progressive weakness in shoulder, arm, leg and hip muslces, muscle atrophy in shoulder, spasticity, cramping, fasciculations, fatigue and loss of speech.

It is now believed that the atrophy in the shoulder muscles is attributable to frozen shoulder syndrome.

Some neurologist hold that PLS is a variant of ALS and that might be why you saw the PLS variant of ALS in the report of one doctor.

Betty, An ohm meter is a meter used to measure electrical current in electronics. You can pick them up at Radio Shack for about 10 bucks.

I blame my wiring on my parents and the nuns that taught me in grade school.:mrgreen:

PZ

 

[KeeKer]

Zaphoon, wrong wiring is what makes the most interesting people!

 

[peter57]

Hi All,
I was diognosed with PLS late last year after app 3 years of issues with my left hand/ arm.
It then effected my left leg/ walking about 18 months ago and speech began to slow down 12 months ago.
Currently i am still walking with either a cane or walker and talking very slowly with slurred speech.

Breathing and eating/ drinking are all fine (including those Coopers Pale, the meal in a bottle).

So i guess i fall into the "grey" area as well.

Zaphoon- good description of a ohm meter,
Re the cause -- perhaps that is my problem too, too many shorts in my wiring or too many shocks from my work as a "sparky" for 35 years, boy did i get a few good ones in the early days
Wait a tick, perhaps if i give myself 1 more shock it might kick me going again,:twisted:, no only joking it would throw me across the room.
and the landing would hurt

cheers
Peter

 

[miss91]

Hi Betty - I just had a question on your EMG's - I saw an older post on another thread in which you mentioned you had an ABNORMAL EMG. If you do not have denervation/reinnervation, what was it that made the EMG come back abnormal?

 

[BLPhill]

It indicated MND and scattered fascics but no denervation or reinervation.

 

[BLPhill]

I have had 2 neuromuscular specialists say its PLS.

1 ALS specialist says UMN dominate ALS.

3 neuros say UMN dominate ALS.

2 EMG DRS say PLS.

See where my confusion comes in!

I honestly do not think any of them knows for sure, but if quick progression plays a part in this, I would also say UMN ALS.

 

[BLPhill]

My current neuro wants to do another EMG, she thinks it will change. She also wants to do a spinal tap, I don't know the reason for this.:roll:

 

[miss91]

Thank you for your answers....I would think denervation would show on the EMG if you have atrophy (I do have atrophy but a normal EMG and no diagnosis) - however I know nothing technical of course, but am trying to learn here.....still wishing you luck!

 

[BLPhill]

Miss 91

I do have atrophy with no denervation present. Currently I can walk with a walker but very slowley. Most people cannot understand a word I say including my family. I use a litewriter. My arms and hands have very mild weakness, my chest feels tight but with no breathing problems as of yet. I can still eat normaly and with occasional choking on thin liquids. My FVC is 82, my FRS is 34.