Old 09-12-2017, 06:59 PM #1 (permalink)
pilatesgal's Avatar
New Member (Say Hi)
 
Join Date: 2017
City: vestal
State: ny
Country: usa
Interest: I am interested in learning about ALS/MND.
Posts: 3
pilatesgal is on a distinguished road
pilatesgal pilatesgal is offline
New Member (Say Hi)
pilatesgal's Avatar
Join Date: 2017
City: vestal
State: ny
Country: usa
Interest: I am interested in learning about ALS/MND.
Posts: 3
pilatesgal is on a distinguished road
Default Requesting Advice Please

Hi. I'm Jen, 48y/o. Pilates Instructor. I'm requesting any advice or direction as I am unsure I am on the right path. Thank you.
I've been on the diagnosis path since March 2017.
My symptoms:
Dec 2016
Right thumb shakes when I grip small objects
Feb 2017
Left foot begins cramping while at rest
Left arm/shoulder begins to feel weak in Pilates
Balance begins to degenerate
March 2017
Get massage and that night left arm/shoulder pain
begins and has never improved. Entire body begins
twitching and has not stopped since. Left Hand
begins involuntary contractions, and right hand
starts doing the same a month later.
April 2017
First Neuro Appt. Dr. orders neck MRI. No issues.
So he orders brain MRI. Finds minimal white matter
lesions, says no MS, possibly due to vasculitis, doesn't
expound. Orders EMG
May 2017
EMG/NCV --he doesn't give me results just says no MS
nor ALS. Yay, I'm happy
Two weeks later I'm on vacation and end up in Tampa
Hospital. Was having issues climbing stairs and air
hunger begins. Share the last few months of medical
issues and doctor admits me to run tests. Had another
EMG/NCV, and Dr. tells me Left Thumb has low
velocity?!? but doesn't share any other findings. Does
spinal tap which found nothing. Orders tons of
bloodwork And orders another brain MRI with same
results as first one. Tells me she
can't tell me yes or no if I have ALS and refers me to
Syracuse, NY, ALS clinic which later denies seeing me.
Late May my Left Leg weakens and I feel like I am now
negotiating my steps. This has gradually progressed to
date.
June 2017
My local Neuro refers me to my third Neuro at Columbia
to rule out ALS. He gives thorough clinical and orders
another EMG/NCV! That's three of these tests in 7
weeks! He tells me Left Thumb, median
nerve damage, but no ALS. Yay, again I'm happy.
August 2017
F/U with local Neuro. He performs clinical. Says I have brisk bilateral reflexes, neutral babinski, no clinical weakness, but he thinks ALS is still possible. Tells me to come back in November to see his Physican Assistant and schedules me for February 2018 to see him again. So, now I am just waiting. Since that last appointment my upper back and neck feels weak and the muscles around my mouth feel weak. I have also noticed swallowing issues and feel like my tongue is sluggish, for lack of a better description.

I have read the stickies and have held off posting all summer because I know that "feeling"weak shouldn't matter. But, as a Pilates Instructor for 20 years I am hyper aware of my muscles, my balance, etc...and something is very wrong and progressing. If anyone has any advice I would be so appreciative.

Questions:
1. If you are comfortable and the forum allows it, does anyone have any opinion on the Dr's I have seen?
1. Dr. Aamir Rasheed, Johnson City, NY
2. Dr. Rossitza Chichkova, Tampa, FL
3. Dr. Peter Kim, Columbia, NYC

Question 2
Should I seek another opinion, or does waiting till November to see the PA and then February to see my local Neuro sound like the right path?

Question 3
Is exercise a yes or a no with ALS? I have read so many conflicting opinions. I am not failing as of yet at anything, but things are getting harder and harder and my muscles, especially on the left side of my body, shake miserably when I do try to workout. I'm not sure if I am helping or hindering myself...

Thank you in advance for any feedback or guidance, I truly appreciate your time.
Jen
pilatesgal is offline   Reply With QuoteReply With Quote
Old 09-12-2017, 07:23 PM #2 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 4,677
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 4,677
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Requesting Advice Please

Not to be a broken record, Jen, but letting someone get away with rephrasing or summarizing the EMGs doesn't do you much good, and gives us less to go on in attempting to answer your questions. You have the right to request and receive the full reports, likewise MRIs and labs.

But short answer, if all 3 tests only show a nerve problem in your L thumb, ALS is not very likely. Has the "air hunger" recurred?

Best,
Laurie
lgelb is offline   Reply With QuoteReply With Quote
Old 09-12-2017, 07:33 PM #3 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 5,497
Nikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant future
♥ Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 5,497
Nikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant futureNikki J has a brilliant future
Default Re: Requesting Advice Please

I tried to look up the three doctors listed. I found them all but there were not details on board certifications and fellowship specialty for any. I think the 2 men are general neurologists. The woman has cowritten a chapter on EMGs and lists neuromuscular as an interest. We do have people who have gone to USF so maybe they can chime in.

If an ALS clinic refused to see you that sounds positive! They apparently saw nothing in your records to warrant a consult.

As you know feeling weak but no clinical weakness is not how PALS experience things. I do understand your symptoms are worrisome and when you do something like Pilates regularly you can see the difference in performance ( I used to teach pilates too). Clearly something is wrong but the apparently normal emgs are a good sign.

Another opinion? I might try to see a neuromuscular specialist if you can get to see one. They often do screen by reading EMG reports but maybe your pcp can advocate for you. Presumably s/he sees the difference you describe

The rule for exercise my clinic gives is that if it takes more than an hour to recover fully it was too much

I hope you can find an answer soon. There are a lot of things that give odd neurological symptoms and almost all are much more benign than ALS. Let us know what the answer is
Nikki J is offline   Reply With QuoteReply With Quote
Old 09-12-2017, 07:38 PM #4 (permalink)
pilatesgal's Avatar
New Member (Say Hi)
 
Join Date: 2017
City: vestal
State: ny
Country: usa
Interest: I am interested in learning about ALS/MND.
Posts: 3
pilatesgal is on a distinguished road
pilatesgal pilatesgal is offline
New Member (Say Hi)
pilatesgal's Avatar
Join Date: 2017
City: vestal
State: ny
Country: usa
Interest: I am interested in learning about ALS/MND.
Posts: 3
pilatesgal is on a distinguished road
Default Re: Requesting Advice Please

Thank you Laurie for such a quick reply. I have gathered through other threads that I should be gathering all my records so I am working on that. The air hunger has neither gotten worse nor improved since May. Things like talking too long, which is tough since I am an instructor, leave me winded. However, if I stop and take a deep breath I can fill my lungs. I'd like to post again when I have gathered my records and if anyone would walk me through the EMG results that would be awesome. Thank you
pilatesgal is offline   Reply With QuoteReply With Quote
Old 09-12-2017, 07:55 PM #5 (permalink)
pilatesgal's Avatar
New Member (Say Hi)
 
Join Date: 2017
City: vestal
State: ny
Country: usa
Interest: I am interested in learning about ALS/MND.
Posts: 3
pilatesgal is on a distinguished road
pilatesgal pilatesgal is offline
New Member (Say Hi)
pilatesgal's Avatar
Join Date: 2017
City: vestal
State: ny
Country: usa
Interest: I am interested in learning about ALS/MND.
Posts: 3
pilatesgal is on a distinguished road
Default Re: Requesting Advice Please

Thank you Nikki. I've been scattered but now I feel like I can make a plan. I will gather all my records and pursue a neuromuscular specialist. I thought Dr. Kim was one. And thank you for the exercise recommendation. I am happy to hear I can work on a plan for that now, too.
pilatesgal is offline   Reply With QuoteReply With Quote
Old 09-12-2017, 09:19 PM #6 (permalink)
Vincent's Avatar
Senior Member
 
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 578
Vincent is a jewel in the roughVincent is a jewel in the roughVincent is a jewel in the roughVincent is a jewel in the rough
Vincent Vincent is offline
Senior Member
Vincent's Avatar
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 578
Vincent is a jewel in the roughVincent is a jewel in the roughVincent is a jewel in the roughVincent is a jewel in the rough
Default Re: Requesting Advice Please

ALS from what I've seen is pretty apparent if you have it. It doesn't present with pain but with something that doesn't work. It feels normal you just have a muscle that does not fire when it is supposed to. My leg feels fine, but when the heel hits the ground the toes slap the ground. No pain. no sensation of weakness, the muscle that slows my toes down just is not there. I have no idea how many times I was asked about pain. I have no pain other than from a loss of gluteal muscles making sitting painful. The reason I was asked was pain points away from ALS. Doctors are adverse to even saying ALS. It is that which shall not be named. If you have several drs saying no ALS, bust open the champagne, do cartwheels, celebrate the fact you have no need to be here.
Vincent
Vincent is offline   Reply With QuoteReply With Quote
Reply

Tags
advice, als, als?, arm, back, balance, brain, clinic, clinical, cramping, diagnosis, exercise, foot, media, mri, night, pain, shoulder, swallowing, symptoms, tests, tongue, twitching, weakness, wrong


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Edavarone users - alsuntangled requesting data GregK ALS Drug Trials 0 03-24-2017 06:51 PM
Looking for some advice on possible ALS for my dad? jasonsamara Do I Have ALS? Is This ALS? 53 02-20-2017 03:09 PM
More advice polly13 Do I Have ALS? Is This ALS? 5 02-10-2012 10:55 PM
Requesting help with v weird symptoms for 4 months and getting worse day by day... Simsons Do I Have ALS? Is This ALS? 1 03-18-2010 12:20 PM
PALS, requesting help. V depressed... new to symptoms Simsons Do I Have ALS? Is This ALS? 5 03-13-2010 04:35 PM


All times are GMT -5. The time now is 08:34 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016