Status
Not open for further replies.

rrg1953

Member
Joined
Aug 14, 2008
Messages
19
Reason
PALS
Diagnosis
5/2008
Country
US
State
ny
City
newburgh
sounds like exactly what im going through and are experienceing i was working at the same job for 31 years untill they closed ,so i retrained,got my cdl license appx 1 1/2 years ago.but didnt have much of a chance with the symptoms so obvious. also still ride a mc,but its one with a sidecar,mainly for the balance /weight at stops,its been fun actually ,hope to continue next season,thank you for your reply, info and well wishes.
guess i should use spell check first since it wont let you edit my own post
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello. You can edit your posts if you do it right away- I think it is about 10 minutes or so. And you can save yourself (and everybody reading) some time by not posting every past post into a quote on the new post. Everybody reads from the start of a thread, anyway, so to have the same thing repeated makes it confusing for us elderly, LOL. :lol:
 

rrg1953

Member
Joined
Aug 14, 2008
Messages
19
Reason
PALS
Diagnosis
5/2008
Country
US
State
ny
City
newburgh
What was the diagnosed that you received from weschester medical?

Do you no what the results of your emg were?

Have you been to an ALS specialist?
might need an md degree just to make sense of it.
received the test reults report back that i asked for from westchester(2nd opinon emg ) from 8/08 that supposedly ruled out ALS that the first emg proved from 5/08
still waiting on the first one


conclusion were ncv in the upper extremity were within normal likmits.there is mild prolongnation of the median distal motor latency,f wave latencies are boarderline normal ncv in the lower extremities were slow and showed proximal dispersion.

evoked response amplitudes were reduced/sensory nerveconduction velocity showed tha the right medianand sural nerves were mildly slowand of low amplitude. the ulnar sensory resonse is normal.
needle emg of the right upper and lower extremities showed only an occasional fasciculation potential. no abnormal spontaniuos activity was noticed in any other muscles.some incresed amplitude motor unit potential were seen in deltoid and ecr but recruitment was good.in trapezius there were increased numbers of polyphasic motior unit potentials.

impression is there is evidense of a emyclinating nueropathy in the lower extremity.there is mild median compromise of the wrist and evidense o fmyopathic features in trapezic and rectus capitus associated with the droped head syndrome.diagnostics of anterior horncell disease were absent
 

rrg1953

Member
Joined
Aug 14, 2008
Messages
19
Reason
PALS
Diagnosis
5/2008
Country
US
State
ny
City
newburgh
Wow...your case sounds very similar to my husband's. I'm so sorry that you are going through this -- we understand completely the frustration. My husband is 43, presented with weakness in upper extremities, neck flexion weakness, hoarse voice and difficulty swallowing. But, his legs are strong and he still has full fine motor skills in his hands. Walks, bikes, rides his motorcycle, works, etc. This has been going on for almost 2 years. We also have received different diagnosis, including MND most prevalently.

We are now at Columbia University's neuromuscular clinic -- started the evaluation process on 8/29 and still going through lots of testing (just today had a spinal tap.) Unfortunately, they are repeating many of the same tests already done by other neuros -- now have had 4 EMG's, 4 MRI's, etc. This is frustrating for my husband, but on the other hand, we are pleased that Columbia is pursuing every diagnostic tool and avenue available to them. I read in your post that you are trying to get out-of-network approval to go to Columbia. We hope you can get this -- they have given us confidence and hope that they will figure out what is going on. Be prepared, though, it takes awhile to get an appt., and then the process can be lengthy. Good luck -- please keep us posted on your progress and we will do the same.
my wifes insurance now said we can go out of plan network since they dont have any specialists in thiers ,they mentioned columbia medical in nyc,so thats a good thing,since they have a seperate dept for parks and als,just need to have a doctors name,
so if you have one to reccomend in columbia med in nyc that would speed things up possibly,thanks again.robert
 

wright

Very helpful member
Joined
Jan 12, 2008
Messages
1,160
Country
US
State
xx
City
xxxx
If those are the results of your latest EMG, then they are not at all indicative of ALS (not even close). Those results are one of a peripheral neuropathy (e.g. MMN) and possibly . . . on top of the neuropathy . . . a demyelinating disease (e.g. CIDP).

I'm not seeing a myopathy, though (which is what you stated). With a myopathy, the motor unit potentials would be decreased . . . not increased and not polyphasic.

Who on earth gave you an ALS diagnosis and what did they base it on?

Go to an neuromuscular specialist or an ALS specialist and get another opinion.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hello. You can edit your posts if you do it right away- I think it is about 10 minutes or so. And you can save yourself (and everybody reading) some time by not posting every past post into a quote on the new post. Everybody reads from the start of a thread, anyway, so to have the same thing repeated makes it confusing for us elderly, LOL. :lol:

Don't you just love it Cindy when people actually read your post and LISTEN?
 

rrg1953

Member
Joined
Aug 14, 2008
Messages
19
Reason
PALS
Diagnosis
5/2008
Country
US
State
ny
City
newburgh
If those are the results of your latest EMG, then they are not at all indicative of ALS (not even close). Those results are one of a peripheral neuropathy (e.g. MMN) and possibly . . . on top of the neuropathy . . . a demyelinating disease (e.g. CIDP).

I'm not seeing a myopathy, though (which is what you stated). With a myopathy, the motor unit potentials would be decreased . . . not increased and not polyphasic.

Who on earth gave you an ALS diagnosis and what did they base it on?

Go to an neuromuscular specialist or an ALS specialist and get another opinion.

we plan on it,as we speak my wife is geting approval for out of plan insurance network coverage at columbia med in nyc. beth israel was my choice pick columbia
has both pakinsons and als testing and phschians who specialize in those fields,were just waiting for a doctors name either from the ins co or forum member for one at coliumbia med.thanks wright for your reply and info concerning my Dx.robert
 

rrg1953

Member
Joined
Aug 14, 2008
Messages
19
Reason
PALS
Diagnosis
5/2008
Country
US
State
ny
City
newburgh
Wow...your case sounds very similar to my husband's. I'm so sorry that you are going through this -- we understand completely the frustration. My husband is 43, presented with weakness in upper extremities, neck flexion weakness, hoarse voice and difficulty swallowing. But, his legs are strong and he still has full fine motor skills in his hands. Walks, bikes, rides his motorcycle, works, etc. This has been going on for almost 2 years. We also have received different diagnosis, including MND most prevalently.

We are now at Columbia University's neuromuscular clinic -- started the evaluation process on 8/29 and still going through lots of testing (just today had a spinal tap.) Unfortunately, they are repeating many of the same tests already done by other neuros -- now have had 4 EMG's, 4 MRI's, etc. This is frustrating for my husband, but on the other hand, we are pleased that Columbia is pursuing every diagnostic tool and avenue available to them. I read in your post that you are trying to get out-of-network approval to go to Columbia. We hope you can get this -- they have given us confidence and hope that they will figure out what is going on. Be prepared, though, it takes awhile to get an appt., and then the process can be lengthy. Good luck -- please keep us posted on your progress and we will do the same.
do you have a name of a specailist at columbia for referal to use for our ins co
 

rrg1953

Member
Joined
Aug 14, 2008
Messages
19
Reason
PALS
Diagnosis
5/2008
Country
US
State
ny
City
newburgh
do you have a name of a specailist at columbia for referal to use for our ins co

my wife jus called me a little while ago and said we have an appt at columbia mediacal in nyc on 11/7,that good,its at 830 am with the rush hour,thats not good.where does one park around there w//hanicapped tags.on hospital gronds or off site
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
my wife jus called me a little while ago and said we have an appt at columbia mediacal in nyc on 11/7,that good,its at 830 am with the rush hour,thats not good.where does one park around there w//hanicapped tags.on hospital gronds or off site

Is it Colombia/Presby/Cornell UMC? they have at least 5 parking garages, all take cash only (I think). You should be able to find out more on their website. Search website as visitor or patient depending on how their site is set up. good luck to you
 

rrg1953

Member
Joined
Aug 14, 2008
Messages
19
Reason
PALS
Diagnosis
5/2008
Country
US
State
ny
City
newburgh
If those are the results of your latest EMG, then they are not at all indicative of ALS (not even close). Those results are one of a peripheral neuropathy (e.g. MMN) and possibly . . . on top of the neuropathy . . . a demyelinating disease (e.g. CIDP).

I'm not seeing a myopathy, though (which is what you stated). With a myopathy, the motor unit potentials would be decreased . . . not increased and not polyphasic.

Who on earth gave you an ALS diagnosis and what did they base it on?

Go to an neuromuscular specialist or an ALS specialist and get another opinion.

went to columbia medical yeterday in nyc.to the top neuromuscular specialist in this field .this was a third opinion,only because of two previouss conflicting Dx,s.we saw another doctor first,dr. habib who btw is very nice and pleasant before dr.mitsumoto for about an hour and a half of testing and consultation,good thing i had a timeline printed out besides my other emg/ncv results from two previous drs with different Dx,s.
as far as seeing dr.mitsumoto for appx fifteen minutes,)still got charged $850.00 anyway)he said that he dosnt think its ALS,and i should find a movement disorder/parkinons specialist to be treated for that disease ans since my inurance hasnt approved columbia medical or dr .mitsumoto yet and had to pay out of pocket for now i guess its back to westchester medical and start dealing primarily with treating parkinsons disease,
take care and thank you all . i will keep you in my thoughts and prayers
 
Status
Not open for further replies.
Top