Old 04-21-2011, 05:43 PM #1 (permalink)
notme's Avatar
Extremely Helpful Member
 
Join Date: 2011
City: Orlando
State: Fl
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with ALS.
Posts: 2,663
notme is on a distinguished road
notme notme is offline
Extremely Helpful Member
notme's Avatar
Join Date: 2011
City: Orlando
State: Fl
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with ALS.
Posts: 2,663
notme is on a distinguished road
Default Not sure what to do--help appreciated

Hello

As some of you might now, my neurosurgeon feels it's very possible that I have ALS based on his clinical exam and my very marked atrophy in several areas of my hands/arms and leg weakness.

Here is the problem. The neuro feels sure that this atrophy and all is not being caused by my neck after reading my MRI films.

At the request of my daughter, who doesn't want to even talk about the possibility of a MND, I sent my reports to the spine institute for a 2nd opinion. THEY think they can fix my neck.

The ALSA told me specifically to not have any unnecessary surgical procedures because if I do have ALS, apparently, surgery can aggravate it.

So, here is my problem. Do I let them fix my neck or do I wait to see what the ALS clinic has to say next month?

I'm just floored--another person living here that posts is going tomorrow for 2nd or 3rd EMG and I can't even get ONE done that my neurosurgeon ordered. Something is wrong with this system!

Thanks for input
notme is offline  
Old 04-21-2011, 06:18 PM #2 (permalink)
Alyoop's Avatar
Very Helpful Member
 
Join Date: 2010
City: NZ
State: NZ
Country: NZ
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,833
Alyoop is on a distinguished road
Alyoop Alyoop is offline
Very Helpful Member
Alyoop's Avatar
Join Date: 2010
City: NZ
State: NZ
Country: NZ
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,833
Alyoop is on a distinguished road
Default Re: Not sure what to do--help appreciated

No do not get your neck fixed. Surgeons just love to fix everything with a Cut. You cant possibly have surgery without EMG evidence of a radiculopathy causing your symptoms. Anyway you look at it you have to have that EMG before you move on and do anything invasive.
If the EMG finds evidence of a radiculopathy that is causing your atrophy and weakness then thats great, you can get it fixed, but you need that hard evidence.
Alyoop is offline  
Old 04-21-2011, 07:09 PM #3 (permalink)
hopingforcure's Avatar
Very Helpful Member
 
Join Date: 2008
City: Any
State: USA
Country: US
Diagnosed: 09/2007
Posts: 1,435
hopingforcure is on a distinguished road
hopingforcure hopingforcure is offline
Very Helpful Member
hopingforcure's Avatar
Join Date: 2008
City: Any
State: USA
Country: US
Diagnosed: 09/2007
Posts: 1,435
hopingforcure is on a distinguished road
Default Re: Not sure what to do--help appreciated

we have someone who used to post here, is still a member not active though..Has had about15-20 EMG.S.
hopingforcure is offline  
Old 04-21-2011, 07:20 PM #4 (permalink)
TedH5's Avatar
Very Helpful Member
 
Join Date: 2010
City: McDonough
State: GA
Country: US
Diagnosed: 08/2010
Interest: I have been diagnosed with ALS.
Posts: 1,146
TedH5 is on a distinguished road
TedH5 TedH5 is offline
Very Helpful Member
TedH5's Avatar
Join Date: 2010
City: McDonough
State: GA
Country: US
Diagnosed: 08/2010
Interest: I have been diagnosed with ALS.
Posts: 1,146
TedH5 is on a distinguished road
Default Re: Not sure what to do--help appreciated

Regardless of diagnosis you never want to have unneccessary surgery. You need to have a definitive answer before you make any decisions.
TedH5 is offline  
Old 04-21-2011, 07:30 PM #5 (permalink)
Member
 
Join Date: 2007
City: el paso
State: tx
Country: US
Interest: I have been diagnosed with ALS.
Posts: 361
cukita99 is on a distinguished road
cukita99 cukita99 is offline
Member
Join Date: 2007
City: el paso
State: tx
Country: US
Interest: I have been diagnosed with ALS.
Posts: 361
cukita99 is on a distinguished road
Default Re: Not sure what to do--help appreciated

i had neck surgery cus they thought that was causing my foot problem. and when i got worst the surgeon said sorry but there nothing i can do. charged me an arm n leg. 3yrs later diagnosed with als.
cukita99 is offline  
Old 04-21-2011, 07:33 PM #6 (permalink)
Steven B's Avatar
New Member
 
Join Date: 2011
City: Bellflower
State: California
Country: US
Diagnosed: 04/2011
Interest: I have been diagnosed with ALS.
Posts: 38
Steven B is on a distinguished road
Steven B Steven B is offline
New Member
Steven B's Avatar
Join Date: 2011
City: Bellflower
State: California
Country: US
Diagnosed: 04/2011
Interest: I have been diagnosed with ALS.
Posts: 38
Steven B is on a distinguished road
Default Re: Not sure what to do--help appreciated

Hey notme , How are ya? I had neck problems found by an MRI. Neuro said I had 6 Bulging discs with 1 partially torn. Theyn wanted to send me to a pain clinic but I had no pain. I saw a Chirpractor 3 times a week for a little over a month and my neck problems are history
Steven B is offline  
Old 04-21-2011, 07:45 PM #7 (permalink)
rose's Avatar
Extremely Helpful Member
 
Join Date: 2008
City: Anytown
State: Maryland
Country: US
Diagnosed: 7/2008
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 2,892
rose is on a very distinguished roadrose is on a very distinguished road
rose rose is offline
Extremely Helpful Member
rose's Avatar
Join Date: 2008
City: Anytown
State: Maryland
Country: US
Diagnosed: 7/2008
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 2,892
rose is on a very distinguished roadrose is on a very distinguished road
Default Re: Not sure what to do--help appreciated

Neck surgery came up at my clinic appointment earlier this week. I don't need it, the conversation just kind of morphed into the subject from discussing my neck weakness. The opinion of the clinic director at Hopkins, is its just virtually never a good idea for someone who has ALS. She said a person should always discuss it with their neurologist and neurosurgeon, but speaking in generalities, its effect is usually detrimental. PALS either never fully recover, or they experience other losses perhaps amplified or sped up due to the surgery itself, whether it be the anesthesia (affecting breathing), or just the stress on the body from surgery.

Regardless of whether it is your choice to go with surgery, I, too, would caution you strongly about following through with it until you have a firm diagnosis.
rose is offline  
Old 04-21-2011, 07:49 PM #8 (permalink)
rose's Avatar
Extremely Helpful Member
 
Join Date: 2008
City: Anytown
State: Maryland
Country: US
Diagnosed: 7/2008
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 2,892
rose is on a very distinguished roadrose is on a very distinguished road
rose rose is offline
Extremely Helpful Member
rose's Avatar
Join Date: 2008
City: Anytown
State: Maryland
Country: US
Diagnosed: 7/2008
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 2,892
rose is on a very distinguished roadrose is on a very distinguished road
Default Re: Not sure what to do--help appreciated

I wanted to add, that about 6 or 7 years ago I had a total of 7 herniated discs in my back, three in the cervical area, and 4 in lumbar. No surgery. I went through a series of epidural injections which helped tremendously with the pain, and was faithful in going to physical therapy. Eventually it all just settled down on its own. Every so often my lower back will go into spasms and I'm stuck immobile for a few days, but, I'm so glad I waited it out.
rose is offline  
Old 04-21-2011, 08:40 PM #9 (permalink)
notme's Avatar
Extremely Helpful Member
 
Join Date: 2011
City: Orlando
State: Fl
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with ALS.
Posts: 2,663
notme is on a distinguished road
notme notme is offline
Extremely Helpful Member
notme's Avatar
Join Date: 2011
City: Orlando
State: Fl
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with ALS.
Posts: 2,663
notme is on a distinguished road
Default Re: Not sure what to do--help appreciated

HI All

I've been waiting out back and neck issues for years--but with the atrophy and falling and getting hurt all the time, I'm getting more worried.

I don't know what to do. The spine place thinks the atrophy and all is being caused by my neck--the neurosurgeon I saw specifically said it is NOT the cause.

Guess I can afford to hold off on everything til I see the ALS clinic people next month. The problems I'm having just seem to be getting worse.

My legs are doing a weird spasm thing--just jumping on their own--I can stop it by standing on them. I guess it's clonus, if I'm reading those symptoms and video I watched correctly.

I'm not a 'twitchy' person, though. The only fasciculations I have seen are ones on my hand that the neurosurgeon actually pointed out to me.

I keep holding on to the pain issues I'm also having--thinking it must mean not ALS. But, with my neck and back issues--pain is to be expected.

in the final analysis--I'd probably only let them do surgery if they can show me that the neck issues are causing the progressive weakness and atrophy.

Thanks for input, folks. It's appreciated.

My insurance (the crappy one) did finally authorize the EMG/NCV and made me an appt with local neuro for next Tuesday--but I'm hesitant to go. The neurosurgeon office is going to see about ordering whatever rule out bloodwork should be done. I want to go to the ALS clinic with as much already done for them to review as possible.

One guy here apparently went there, though, and they didn't do an EMG on him at all--anyone know anything about the ALS clinic in Tampa at the University of South Florida?
notme is offline  
Old 04-21-2011, 09:28 PM #10 (permalink)
Alyoop's Avatar
Very Helpful Member
 
Join Date: 2010
City: NZ
State: NZ
Country: NZ
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,833
Alyoop is on a distinguished road
Alyoop Alyoop is offline
Very Helpful Member
Alyoop's Avatar
Join Date: 2010
City: NZ
State: NZ
Country: NZ
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,833
Alyoop is on a distinguished road
Default Re: Not sure what to do--help appreciated

You must have the EMG. It will answer the Question ?ALS or ?Radiculopathy. You have been wanting one, so after everyones positive input, sticking up for you cause you can't get one, how the heck could you now be hesitant about having one. Makes no sense at all. A bit of a smack in the face And it's next week!
Alyoop is offline  
Old 04-21-2011, 09:32 PM #11 (permalink)
notme's Avatar
Extremely Helpful Member
 
Join Date: 2011
City: Orlando
State: Fl
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with ALS.
Posts: 2,663
notme is on a distinguished road
notme notme is offline
Extremely Helpful Member
notme's Avatar
Join Date: 2011
City: Orlando
State: Fl
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with ALS.
Posts: 2,663
notme is on a distinguished road
Default Re: Not sure what to do--help appreciated

LOL

No, the hesitance is having it done by someone who is not a specialist--not in 'having it done". I don't want to have it done more than once. I have no tolerance for pain anymore--even things most wouldn't consider painful cause me pain.

I had a liver biopsy and nearly jumped off the table. They had to knock me out. Something in me makes relatively minor things cause me a ton of pain.

Definitely will have the test--just have to decide whether to have it here locally or wait til/if Drs at the clinic order it. I was told that they both (Vu and Katsin) like to do their own.
notme is offline  
Old 04-21-2011, 09:45 PM #12 (permalink)
Alyoop's Avatar
Very Helpful Member
 
Join Date: 2010
City: NZ
State: NZ
Country: NZ
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,833
Alyoop is on a distinguished road
Alyoop Alyoop is offline
Very Helpful Member
Alyoop's Avatar
Join Date: 2010
City: NZ
State: NZ
Country: NZ
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,833
Alyoop is on a distinguished road
Default Re: Not sure what to do--help appreciated

Well that makes sense. Check up on who would be doing the EMG next week. He/she may well be an expert at it. They really are not too bad, pain wise. I have had 5 now. I had a neck injury and it resulted in a radiculopathy, that was the first 2 EMGs. I went on to have my C4 and C5 grafted and plated. I thought it would help with my arm weakness/ fatigue. It did return my weak hand back to normal strenght, but my other symptoms got steadily worse even while in hospital recovering from the surgery. In retrospect it was a daft thing to have done, not one of my better decisions in life LOL
I can asure you they are not as traumatic as a liver biopsy and not as traumatic as a Lumbar puncture either. The LP was the only test that I have EVER burst into tears over. My poor hubby had to come and do it after the resident failed 3 times. Poor resident. His bosses wife bawling her eyes out, bet his hands were shaking, no wonder the poor thing was trying in completely the wrong place LOL. Life is a bit OFF at times .Aly
Alyoop is offline  
Old 04-21-2011, 10:03 PM #13 (permalink)
notme's Avatar
Extremely Helpful Member
 
Join Date: 2011
City: Orlando
State: Fl
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with ALS.
Posts: 2,663
notme is on a distinguished road
notme notme is offline
Extremely Helpful Member
notme's Avatar
Join Date: 2011
City: Orlando
State: Fl
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with ALS.
Posts: 2,663
notme is on a distinguished road
Default Re: Not sure what to do--help appreciated

Mast Spinal tap I had kept me in the hospital for 10 days. NEVER will I have one again. One I had caused some sort of spasms in my legs and the doctor was yelling at me to hold still--I had no control over my legs at all--sheesh. I hate doctors 95% of the time
notme is offline  
Old 04-21-2011, 10:40 PM #14 (permalink)
brentonjb's Avatar
New Member
 
Join Date: 2011
City: Orlando
State: FL
Country: US
Interest: Diagnostic Process of Neuromuscular Disease
Posts: 46
brentonjb is on a distinguished road
brentonjb brentonjb is offline
New Member
brentonjb's Avatar
Join Date: 2011
City: Orlando
State: FL
Country: US
Interest: Diagnostic Process of Neuromuscular Disease
Posts: 46
brentonjb is on a distinguished road
Default Re: Not sure what to do--help appreciated

That could have been your adrenaline. Mine took a lot longer than expected, and I was stuck multiple times until they finally got my fluid.

Afterward my legs wouldn't stop shaking for at least 5 maybe 10 minutes. Definitely was not fun.

But I agree with what everyone else is saying. Get the EMG done first. Try to get an idea or clearer picture of what's going - before any surgery.
brentonjb is offline  
Old 04-23-2011, 06:14 PM #15 (permalink)
Phil's wife's Avatar
Member
 
Join Date: 2010
City: Wake Forest
State: NC
Country: US
Diagnosed: 05/2010
Interest: I lost a loved one to ALS/MND.
Posts: 135
Phil's wife is on a distinguished road
Phil's wife Phil's wife is offline
Member
Phil's wife's Avatar
Join Date: 2010
City: Wake Forest
State: NC
Country: US
Diagnosed: 05/2010
Interest: I lost a loved one to ALS/MND.
Posts: 135
Phil's wife is on a distinguished road
Default Re: Not sure what to do--help appreciated

One thing we have learned as far as EMGs go -- my husband has had two now. One was early in the diagnosis and one of the results were borderline - that was done by a neurologist - not a specialist in ALS. The next EMG was done somewhere else and they were more precise and even put warming blankets on particular areas to get a more accurate read. Those results were not borderline. Time could have been a factor for it - done a year apart, but just a tidbit of knowledge to consider.

Maybe you can ask how many ALS patients have they tested or if there is any additional ALS education/training.
Phil's wife is offline  
Closed Thread

Tags
2nd opinion, als, alsa, atrophy, clinical, emg, mnd, mri, problem, reading, surgery, 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
Insight appreciated OregonGirl Do I Have ALS? Is This ALS? 5 11-03-2015 09:19 PM
Any help would be deeply appreciated Welam Do I Have ALS? Is This ALS? 7 07-19-2014 06:12 PM
Any input is appreciated CuriousCase Do I Have ALS? Is This ALS? 12 03-15-2014 11:31 AM
any help much appreciated angelwings Do I Have ALS? Is This ALS? 2 02-17-2014 05:49 AM
Any Help Appreciated - Cleansing? LinCan General Discussion About PLS 3 05-09-2013 10:00 PM
Hi any help would be greatly appreciated Catstacks Do I Have ALS? Is This ALS? 4 04-26-2013 03:24 PM
Advice appreciated capabilitybrown Do I Have ALS? Is This ALS? 7 04-01-2012 06:38 PM
Help would be appreciated! rnfsat General Discussion About ALS/MND 3 09-01-2009 02:59 PM
ANY help is much, much appreciated... Kiggle Do I Have ALS? Is This ALS? 24 12-30-2008 09:57 AM


All times are GMT -5. The time now is 01:02 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