Old 03-05-2014, 05:42 PM #16 (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: 6,164
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
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: 6,164
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Home from hospital - still no diagnosis

Hyperreflexia is an upper motor disease sign. It is especially significant if it is not symmetrical. It is also a little subjective so please do not read too much into it until you have your appointment. Also many diseases cause hyperreflexia

Last edited by Nikki J : 03-05-2014 at 05:56 PM
Nikki J is offline  
Old 03-05-2014, 09:43 PM #17 (permalink)
Banned
 
Join Date: 2012
City: Gotham
State: Anywhere
Country: US
Diagnosed: 10/2012
Interest: I have been diagnosed with ALS.
Posts: 77
summerguy2007 is on a distinguished road
summerguy2007 summerguy2007 is offline
Banned
Join Date: 2012
City: Gotham
State: Anywhere
Country: US
Diagnosed: 10/2012
Interest: I have been diagnosed with ALS.
Posts: 77
summerguy2007 is on a distinguished road
Default Re: Home from hospital - still no diagnosis

I had bad pain in my calves, especially my R calf, and now (years later) my R leg is the worst. I also had a nagging pain in my lower R hip, which disappeared a few years ago. I assume all the MRI's are unremarkable. The blood work is to rule out many things, especially West Nile Virus and Lyme. The EMG I had was done by 2 doctors, one of whom runs 2 ALS clinics at 2 different hospitals. He gave me the diagnosis right then and there after the last muscle probes were done. What a bummer that was! I have strong hyperreflexes and positive Babinsky.

I'm sorry this seems to be dragging along. If you feel it is necessary, contact the ALS Association and they should be able to give you names of a few Neuros who may run another EMG. I believe some are better than others at doing it and evaluating it.

In Your Community - The ALS Association
summerguy2007 is offline  
Old 03-12-2014, 02:29 PM #18 (permalink)
New Member
 
Join Date: 2014
City: dixie
State: usa
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 68
Drewsmom is on a distinguished road
Drewsmom Drewsmom is offline
New Member
Join Date: 2014
City: dixie
State: usa
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 68
Drewsmom is on a distinguished road
Default Re: Home from hospital - still no diagnosis

Got into see the neuromuscular neurologist today. The muscle biopsy was normal. It was this drs first time seeing my husband and he did no clinical exam. No reflexes, no muscle testing no real observation of his muscle wasting. Only said that since he is still walking he still has use of muscles and that he did not see him before he has no way of knowing if he has muscle wasting or not. Seriously. He is going to send him to outpatient physical therapy and a referral to a rheumatologist. All of the bloodwork we have had done is not suggestive of anything autoimmune. Also said 90% of anything neuromuscular is not painful. He does have a lot of burning type pain in his legs and ribs. We will follow back in a few months for possibly a repeat EMG. The MRI he had in the hospital only showed minimal white matter disease.
Wile I am thankful we did not receive any bad news, it is so frustrating to not be heard and to not know what is really going on.
Drewsmom is offline  
Old 03-12-2014, 03:19 PM #19 (permalink)
Banned
 
Join Date: 2013
City: Tucson
State: AZ
Country: US
Posts: 126
bluedog is an unknown quantity at this point
bluedog bluedog is offline
Banned
Join Date: 2013
City: Tucson
State: AZ
Country: US
Posts: 126
bluedog is an unknown quantity at this point
Default Re: Home from hospital - still no diagnosis

A big step toward knowing what is really going on is getting a copy of the EMG report. Did you get a copy yet?
bluedog is offline  
Old 03-12-2014, 04:36 PM #20 (permalink)
New Member
 
Join Date: 2014
City: dixie
State: usa
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 68
Drewsmom is on a distinguished road
Drewsmom Drewsmom is offline
New Member
Join Date: 2014
City: dixie
State: usa
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 68
Drewsmom is on a distinguished road
Default Re: Home from hospital - still no diagnosis

I had to fill out the same form I filled out before and re-fax it to the office. They could not print the EMG report for me, although it was right there on the computer.

What else could this possibly be? MRI only showed slight white matter disease. Bloodwork normal from Mayo. No Perineoplastic disease. No Lyme disease. No poisonings or toxins. Now no muscle disease or myopathy. What in the world is left?
Drewsmom is offline  
Old 03-12-2014, 08:33 PM #21 (permalink)
Dusty7's Avatar
Senior Member
 
Join Date: 2013
City: Orlando
State: FL
Country: US
Diagnosed: 08/2013
Interest: I have been diagnosed with ALS.
Posts: 521
Dusty7 is on a very distinguished road
Dusty7 Dusty7 is offline
Senior Member
Dusty7's Avatar
Join Date: 2013
City: Orlando
State: FL
Country: US
Diagnosed: 08/2013
Interest: I have been diagnosed with ALS.
Posts: 521
Dusty7 is on a very distinguished road
Default Re: Home from hospital - still no diagnosis

Drewsmom, as I said on 2/28, “…If he's only showing LMN signs, the neuromuscular guy will probably also not say ALS yet. Or if they're not saying ALS because they're not seeing progression to the other body regions, then again, any neuro may stop at MND and not go to ALS...” So the fact that he did not say ALS is somewhat expected.

And on 3/5, I asked, “Is it possible the supervising physician said ‘myelopathy’, not ‘myopathy...’ because “Cervical spondylotic myelopathy is the most common cause of spinal cord dysfunction in older persons.” Nd myopathy just sounded weird. I didn’t see an answer to this, so that seems to still be on the table.

I know it’s frustrating not knowing, but without the EMG results, we are all just guessing. I know at Mayo in Jacksonville, I can just sign on and get copies of my EMGs. And my PCP is copied on the results of every visit to my local neuro, including EMGs, NCS’s, ANS’s, blood tests, etc/. I assume you have a longer relationship with your PCP than any of your neuros. Go see him. He should have reports from everyone he referred you guys to. Good luck.
Dusty7 is offline  
Old 03-12-2014, 10:21 PM #22 (permalink)
New Member
 
Join Date: 2014
City: dixie
State: usa
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 68
Drewsmom is on a distinguished road
Drewsmom Drewsmom is offline
New Member
Join Date: 2014
City: dixie
State: usa
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 68
Drewsmom is on a distinguished road
Default Re: Home from hospital - still no diagnosis

Dusty - I pulled out his MRI and it states: mild multilevel degenerative changes predominately consisting of disk bulges at C4-C5 and C5-C6. Moderate central canal narrowing at C4-5 and mild let neural foraminal narrowing at C5-6. No cord or nerve root compression.
So I would assume this rules out myelopathy, but not certain. I am sure a neurosurgeon would be happy to operate just in case. Surgery at this point overwhelms me for him, he is already so weak. I just don't know what to think at this point.

Is considering an appointment at Mayo ridiculous at this point? Or maybe just try to forget getting a diagnosis for a while and see what transpires at outpatient PT? Maybe he will get stronger...
Drewsmom is offline  
Old 03-13-2014, 03:29 AM #23 (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: 5,686
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: 5,686
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: Home from hospital - still no diagnosis

With no cord compression, no indication for surgery. Many people have such changes as part of aging. This rpt does not describe the level of myelopathy that would mimic ALS.

Dusty is right, the EMG is key. And yes, the PCP can give/send it to you. But given the lack of responsiveness/coordination you describe, your husband may want to receive care from another facility.
lgelb is offline  
Old 03-13-2014, 02:45 PM #24 (permalink)
Dusty7's Avatar
Senior Member
 
Join Date: 2013
City: Orlando
State: FL
Country: US
Diagnosed: 08/2013
Interest: I have been diagnosed with ALS.
Posts: 521
Dusty7 is on a very distinguished road
Dusty7 Dusty7 is offline
Senior Member
Dusty7's Avatar
Join Date: 2013
City: Orlando
State: FL
Country: US
Diagnosed: 08/2013
Interest: I have been diagnosed with ALS.
Posts: 521
Dusty7 is on a very distinguished road
Default Re: Home from hospital - still no diagnosis

Drewsmom, Mayo? Maybe somebody on the forum can recommend someone in Atlanta. Seems a lot closer.
Dusty7 is offline  
Old 03-26-2014, 02:07 PM #25 (permalink)
New Member
 
Join Date: 2014
City: dixie
State: usa
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 68
Drewsmom is on a distinguished road
Drewsmom Drewsmom is offline
New Member
Join Date: 2014
City: dixie
State: usa
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 68
Drewsmom is on a distinguished road
Default Re: Home from hospital - still no diagnosis

Finally received his EMG report in the mail. The NCS was normal in upper and lower extremities. The EMG was listed as "abnormal" in the conclusion. He has reduced interference pattern and recruitment of upper and lower extremities. Positive sharp waves in lower extremity. No fasiculations reported on EMG. Also said no widespread denervation.

We went to outpatient PT yesterday for his evaluation. The PT said he is absolutely not to be walking anywhere without the rolling walker. He is very concerned for his safety and also for energy conservation measures. He said that he does have tone issues. And that his muscles are not cooperating. If his flexors are contracting, the extensors should be relaxing and his are not. They are all firing at the same time.

Any thoughts?
Drewsmom is offline  
Old 03-27-2014, 12:45 PM #26 (permalink)
Dusty7's Avatar
Senior Member
 
Join Date: 2013
City: Orlando
State: FL
Country: US
Diagnosed: 08/2013
Interest: I have been diagnosed with ALS.
Posts: 521
Dusty7 is on a very distinguished road
Dusty7 Dusty7 is offline
Senior Member
Dusty7's Avatar
Join Date: 2013
City: Orlando
State: FL
Country: US
Diagnosed: 08/2013
Interest: I have been diagnosed with ALS.
Posts: 521
Dusty7 is on a very distinguished road
Default Re: Home from hospital - still no diagnosis

You report, “The NCS was normal in upper and lower extremities.” An abnormal NCS study could show (1) slow velocities (which would signify probable demyelination of the nerve axons) or (2) normal velocities and low amplitudes (which would point toward damage to the axon itself). Remember that the lower motor neuron (also, anterior horn cell) is in the spinal cord and sends one axon out to the muscle it innervates; the axon is covered with myelin, sort of like insulation around a wire.

A finding of “normal” indicates to this non-doctor that the problem is not in the axon and myelin—and that is why the “House team” could rule out neuropathies. So the problem is most likely in the lower motor neurons (in the spinal cord) or the upper motor neurons (in the brain). Lower motor neuron symptoms include atrophy, weakness, fasciculation, fibrillations, hypotonia and hyporeflexia. Upper motor neuron signs include hypertonia, hyperreflexia, clonus, spasticity and Babinski sign.

Remember that muscles work in pairs. As an example, the biceps pull your elbow in and your triceps push your elbow out. When your brain tells your biceps to contract, a simultaneous order tells your triceps (the antagonist muscle) to relax. In spasticity, the triceps don’t get the message. Or you can tell your foot to lift up, but the antagonist muscle keeps pushing it down. You tell your fist to open, the antagonist muscles tell it to stay closed. Or, as your PT said, “If his flexors are contracting, the extensors should be relaxing and his are not. They are all firing at the same time.” As you noted earlier, “his lower reflexes are 4+.” So the spasticity and hyperreflexia both point to an upper motor neuron problem.

Next, the EMG report you quote said there was no widespread deneravation and no fasiculations reported on EMG. As stated at The basics of electromyography -- Mills 76 (suppl 2): ii32 -- Journal of Neurology, Neurosurgery & Psychiatry, “EMG is an obligatory investigation in motor neurone disease to demonstrate the widespread denervation and fasciculation required for secure diagnosis.”

So, at this point—and in my non-doctor opinion--your husband is showing definite upper motor neuron signs, but the lack of widespread denervation and fasciculations (plus the pain) seem to point away from motor neuron disease. So that may be the good news while the bad news is nobody yet can figure out what it is.

Do your neuros have any idea of what they are looking at? (And, by the way, how old is your husband?)

In the meantime, try to be patient, stick with the PT, follow his safety instructions, and good luck!
Dusty7 is offline  
Old 03-27-2014, 06:08 PM #27 (permalink)
New Member
 
Join Date: 2014
City: dixie
State: usa
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 68
Drewsmom is on a distinguished road
Drewsmom Drewsmom is offline
New Member
Join Date: 2014
City: dixie
State: usa
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 68
Drewsmom is on a distinguished road
Default Re: Home from hospital - still no diagnosis

Dusty - thank you again for your detailed reply! The report lists atrophy in most all muscles and strength varies from 2/5 to 3/5. What do you think the reduced recruitment and positive sharp waves could indicate? I am sure everyone here would say "ask your doctor". And if our neuromuscular "specialist" would have bothered to read the EMG - maybe he would have explained it to us. Apparently he couldn't be bothered with us and instead listed on his notes of the visit date that the EMG was "normal". He also indicated on the notes that he completed a neurological examination. As I stated previously, he did no clinical examination whatsoever. Obviously I have no faith in this guy. We are back at square one. And I am so over this. Fortunately, the hematologist that my husband saw early in this journey remains concerned. He has already made the referral to Mayo. However, he went through internal medicine so it will probably be months until we get in.
Drewsmom is offline  
Old 03-27-2014, 06:09 PM #28 (permalink)
New Member
 
Join Date: 2014
City: dixie
State: usa
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 68
Drewsmom is on a distinguished road
Drewsmom Drewsmom is offline
New Member
Join Date: 2014
City: dixie
State: usa
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 68
Drewsmom is on a distinguished road
Default Re: Home from hospital - still no diagnosis

Forgot to add that he is 46.
Drewsmom is offline  
Old 03-27-2014, 07:23 PM #29 (permalink)
Member
 
Join Date: 2013
City: Stockholm
State: None
Country: SE
Interest: Other
Posts: 226
Kosmoskatten is on a distinguished road
Kosmoskatten Kosmoskatten is offline
Member
Join Date: 2013
City: Stockholm
State: None
Country: SE
Interest: Other
Posts: 226
Kosmoskatten is on a distinguished road
Default Re: Home from hospital - still no diagnosis

First, I am sorry to hear that you are having such a hard time with your husbands doctors. I hope you will get that appointment with Mayo as soon as possible.

This is probably something that would have been mentioned earlier, but is your husband a diabetic? And, has he had a spinal tap?
Kosmoskatten is offline  
Old 03-27-2014, 07:43 PM #30 (permalink)
Dusty7's Avatar
Senior Member
 
Join Date: 2013
City: Orlando
State: FL
Country: US
Diagnosed: 08/2013
Interest: I have been diagnosed with ALS.
Posts: 521
Dusty7 is on a very distinguished road
Dusty7 Dusty7 is offline
Senior Member
Dusty7's Avatar
Join Date: 2013
City: Orlando
State: FL
Country: US
Diagnosed: 08/2013
Interest: I have been diagnosed with ALS.
Posts: 521
Dusty7 is on a very distinguished road
Default Re: Home from hospital - still no diagnosis

Drewsmom, if you're thinking Mayo in Jacksonville, I called them (neurology-ALS) directly. I did not wait for my local neuro's referral and they said it was not necessary. Tell them your husband has been diagnosed with hyperreflexia and spasticity and his EMG was dirty. They got me in in less than 3 weeks. Maybe if you're thinking Minnesota, the same would be true. Don't wait for a referral.

You're doing a great job of pushing this. Just keep on and you will get your answer. We can only pray it's a good answer. but at least it will be an answer. I know the uncertainty can be worse than the truth.

Good luck and our prayers are with you. Please keep us informed.
Dusty7 is offline  
Closed Thread

Tags
back, biopsy, burning, diagnosis, emg, muscle, muscle biopsy, neurologist, no diagnosis, pain, story, tests, walker


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
Free to a good home ... or any home for that matter... smoochiegal Current Caregivers (CALS) 22 03-26-2015 05:04 PM
Clinitron At-Home Air Fluidized Therapy Hospital Bed For Sale bets004 Used ALS Equipment for Sale! 1 02-17-2015 12:23 PM
nursing home vs. home care? sh789 Current Caregivers (CALS) 7 08-01-2013 09:03 AM
Back pain from hospital bed at home herra General Discussion About ALS/MND 11 01-30-2013 01:46 PM
Are you in Hospital, NH or have Home Health? Please read notme Tips, Tricks, and Gadgets 14 08-15-2011 03:08 PM
In the hospital catcaniac Current Caregivers (CALS) 34 06-23-2011 10:51 AM
Going Home/Staying in Hospital on a Vent + What is day to day life like on home vent? DavidS Current Caregivers (CALS) 9 01-19-2011 11:48 AM
Home on a ventilator or staying in the hospital - potentially indefinitely DavidS General Discussion About ALS/MND 31 03-15-2010 02:27 PM
tcm hospital bala80 General Discussion About ALS/MND 13 01-23-2008 09:16 PM


All times are GMT -5. The time now is 02:03 PM.

 

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