Old 02-19-2015, 11:46 AM #1 (permalink)
New Member
 
Join Date: 2015
City: st cloud
State: mn
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Sikesea is on a distinguished road
Sikesea Sikesea is offline
New Member
Join Date: 2015
City: st cloud
State: mn
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Sikesea is on a distinguished road
Default Questions before neuro follow up on monday

i have a family history of limb girls muscular dystrophy. 10 years ago, I noticed isolated atrophy in one thigh muscle. I was told I probably had MD because of my mother and aunt's MD diagnoses. I did not follow through with neurology because my symptoms were stable and because there was no treatment. Last year, I began having significant weakness in my left thigh with occasional tripping as well as atrophy in my left hand. I have had intermittent cask updating. I finally saw a neuro because of the fast progression and because of the distal atrophy which is not typical of MD in my family. At that appointment, he told me I had last knife rigidity, a positive jaw jerk and pronator drift. I also have hand cramps and muse spasms. He wants to rule out FSH dystrophy based on family history but alluded " it could. E something else." Thoughts? Questions I should ask? Thank you.
Sikesea is offline  
Old 02-19-2015, 12:11 PM #2 (permalink)
New Member
 
Join Date: 2015
City: st cloud
State: mn
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Sikesea is on a distinguished road
Sikesea Sikesea is offline
New Member
Join Date: 2015
City: st cloud
State: mn
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Sikesea is on a distinguished road
Default Re: Questions before neuro follow up on monday

I am using my phone so I screwed up several important words. I have intermittent fasiculations just in the muscles with weakness and clasp knife rigidity. I had one EMG when I was 22 which was normal. I was sort of a guinea pig for the mda clinic who wanted to see if my brother or I had MD. It was so painful that I haven't repeated one. I am now 44. I think that's the most important info that I left out. I know I have something quite wrong. I just don't know if you can have upper motor neuron signs and fasiculations with MD. My mom does not.
Sikesea is offline  
Old 02-19-2015, 12:40 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: 6,633
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: 6,633
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: Questions before neuro follow up on monday

I have genetic ALS. I have found that things have been quite different among family members so I would not necessarily go by what your mom had even though you presumably share the same genetic problem
What should you ask the neurologist? What you have been asking here? Are my symptoms consistent with MD? What else could it be? What tests do we need to find out? And if this a general neuro ask for a referral to a specialist neurologist
You might get more input into what is consistent with MD in an MD group because our experience here is with MND
Good luck
Nikki J is offline  
Old 02-19-2015, 01:15 PM #4 (permalink)
New Member
 
Join Date: 2015
City: st cloud
State: mn
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Sikesea is on a distinguished road
Sikesea Sikesea is offline
New Member
Join Date: 2015
City: st cloud
State: mn
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Sikesea is on a distinguished road
Default Re: Questions before neuro follow up on monday

I suppose I was also asking if mnd seemed a possibility to people who would know about that. I was asking for questions that might not be obvious to ask.
Sikesea is offline  
Old 02-19-2015, 03:17 PM #5 (permalink)
MaxEidswick's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: Pinehurst
State: Texas
Country: US
Diagnosed: 08/2013
Interest: I have been diagnosed with ALS.
Posts: 5,576
MaxEidswick is on a distinguished road
MaxEidswick MaxEidswick is offline
Extremely Helpful Member
MaxEidswick's Avatar
Join Date: 2013
City: Pinehurst
State: Texas
Country: US
Diagnosed: 08/2013
Interest: I have been diagnosed with ALS.
Posts: 5,576
MaxEidswick is on a distinguished road
Default Re: Questions before neuro follow up on monday

Most important question: are you a qualified ALS mnd neurologist? Clinical experience? Most do not!
MaxEidswick is offline  
Old 02-21-2015, 07:17 PM #6 (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: 6,439
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: 6,439
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: Questions before neuro follow up on monday

At an MDA clinic, they should be able to differentiate dystrophy/myopathy from MND and other possibilities. Four such clinics are listed in MN. I would head to one of those, despite your experiences decades ago. They can also compare your old EMG with a current one if a repeat test is indicated. While atrophy of ten years' standing certainly does not suggest MND, no law says you can't have two things, unfortunately.

As for expertise, IMHO everyone should look up the doc's bio in advance, which is what the Net is for, and not waste precious encounter time asking for that info. I would recommend that you do the same. Hope you find some answers.
lgelb is offline  
Old 02-23-2015, 08:02 AM #7 (permalink)
New Member
 
Join Date: 2015
City: st cloud
State: mn
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Sikesea is on a distinguished road
Sikesea Sikesea is offline
New Member
Join Date: 2015
City: st cloud
State: mn
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Sikesea is on a distinguished road
Default Re: Questions before neuro follow up on monday

Oh, I checked. Believe me! its an als center of excellence and the doc is neuromuscular boarded with a special interest in anterior horn cell disease. All I was trying to do was to prepare myself for what I think is going to be pretty bad news. I wasn't thrilled with the MD diagnosis but this would be the cherry on top and I can't fall apart because I run a clinic for patients with cancer and depression this afternoon.

My husband and I also came to the conclusion that one illness would not protect against or preclude the other. It's been a fun month around here.

The other thing, do we have anyone here from nc and if so, did you have an exposure to the water at camp le jejune? I was born there and lived there for several years at paradise point. Can't help but wonder if that caused this.
Sikesea is offline  
Old 02-23-2015, 09:33 AM #8 (permalink)
Clearwater AL's Avatar
Very Helpful Member
 
Join Date: 2013
City: Central NC
State: NC
Country: US
Diagnosed: 12/2016
Interest: I have been diagnosed with ALS.
Posts: 1,350
Clearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to behold
Clearwater AL Clearwater AL is online now
Very Helpful Member
Clearwater AL's Avatar
Join Date: 2013
City: Central NC
State: NC
Country: US
Diagnosed: 12/2016
Interest: I have been diagnosed with ALS.
Posts: 1,350
Clearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to behold
Default Re: Questions before neuro follow up on monday

I believe there is a Class Action law suit (something like that) going on about that. You might want to check the internet and or Marine Forums/web sites about it.
Clearwater AL is online now  
Old 02-23-2015, 05:02 PM #9 (permalink)
New Member
 
Join Date: 2015
City: st cloud
State: mn
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Sikesea is on a distinguished road
Sikesea Sikesea is offline
New Member
Join Date: 2015
City: st cloud
State: mn
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Sikesea is on a distinguished road
Default Re: Questions before neuro follow up on monday

EMG tomorrow. Dang. That was fast. He's not sure what to say except that the symptoms don't match what my mom and aunt have and that the fasiculations are worrisome. My history of probable MD is throwing things off. He says MND is lower on the list than neuromyotonia. I am not exactly sure why that is but for tonight, I'll take it. And tomorrow, I suppose I will have an answer.
Sikesea is offline  
Old 02-23-2015, 05:12 PM #10 (permalink)
gooseberry's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: Pit of hot
State: FL
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,455
gooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to behold
gooseberry gooseberry is offline
Extremely Helpful Member
gooseberry's Avatar
Join Date: 2014
City: Pit of hot
State: FL
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,455
gooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to behold
Default Re: Questions before neuro follow up on monday

thoughts and prayers are with you
gooseberry is offline  
Old 02-23-2015, 05:36 PM #11 (permalink)
Clearwater AL's Avatar
Very Helpful Member
 
Join Date: 2013
City: Central NC
State: NC
Country: US
Diagnosed: 12/2016
Interest: I have been diagnosed with ALS.
Posts: 1,350
Clearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to behold
Clearwater AL Clearwater AL is online now
Very Helpful Member
Clearwater AL's Avatar
Join Date: 2013
City: Central NC
State: NC
Country: US
Diagnosed: 12/2016
Interest: I have been diagnosed with ALS.
Posts: 1,350
Clearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to beholdClearwater AL is a splendid one to behold
Default Re: Questions before neuro follow up on monday

Sikesea, I hope your EMG tomorrow brings better news over your current situation. I would follow through on that Camp Le Jejune thing though. I was on an 8" self propelled howitzer in Viet Nam, we used to clean parts of the gun with Carbon Tetrachloride which they have found has direct link to central nervous system disorders and spinal cord disorders. Of course, the neurology community is still reluctant to link MNDs with chemical exposure. I think that carbon tetrachloride has since been banned for use in this country. But, who knows what they dumped on the ground at Camp Le Jejune. Something to investigate in the future. Again, hope the EMG tomorrow brings a somewhat relief.

PS. I may have misspelled Camp Le Jejune... I was Army.
Clearwater AL is online now  
Old 02-23-2015, 07:56 PM #12 (permalink)
New Member
 
Join Date: 2015
City: st cloud
State: mn
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Sikesea is on a distinguished road
Sikesea Sikesea is offline
New Member
Join Date: 2015
City: st cloud
State: mn
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Sikesea is on a distinguished road
Default Re: Questions before neuro follow up on monday

Well, I misspelled it too but I blame auto correct! I will look into it but I know from the ATsDR registration that the incidence of ALS is higher in camp le jeune people. No idea if any other neuro disorders are higher.
Sikesea is offline  
Old 02-24-2015, 08:05 AM #13 (permalink)
New Member
 
Join Date: 2015
City: st cloud
State: mn
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Sikesea is on a distinguished road
Sikesea Sikesea is offline
New Member
Join Date: 2015
City: st cloud
State: mn
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Sikesea is on a distinguished road
Default Re: Questions before neuro follow up on monday

Do you think pretreating with tramadol would be helpful for the EMG? I found the other one I had to be excrutiating. Or, could this screw up results in some way?
Sikesea is offline  
Old 02-24-2015, 08:22 AM #14 (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: 6,633
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: 6,633
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: Questions before neuro follow up on monday

Since tramadol has a warning for seizures I would think there is at least a possibility it could somehow affect an EMG
I have heard of people taking tylenol or advil before. On the non med side do not use lotion. That seems to increase discomfort
Nikki J is offline  
Old 02-24-2015, 03:08 PM #15 (permalink)
New Member
 
Join Date: 2015
City: st cloud
State: mn
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Sikesea is on a distinguished road
Sikesea Sikesea is offline
New Member
Join Date: 2015
City: st cloud
State: mn
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 11
Sikesea is on a distinguished road
Default Re: Questions before neuro follow up on monday

That wasn't much fun but got reasonably good news. Just myopathy. Thanks for the advice and listening to my concerns. All the best to you.
Sikesea is offline  
Closed Thread

Tags
atrophy, cramps, family, family history, muscle, neurology, progression, questions, spasms, symptoms, treatment, weakness


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
Questions to ask neuro ShiftKicker Do I Have ALS? Is This ALS? 26 06-27-2015 12:07 PM
Blindsided by possibility of ALS at recent neuro follow up, scared. Fig1985 Do I Have ALS? Is This ALS? 13 04-17-2015 10:11 AM
Neuro Sending me to Mayo - Questions KimT Do I Have ALS? Is This ALS? 17 01-06-2015 06:52 PM
What Questions To Ask - Neuro Appt Friday BeautifulWreck Do I Have ALS? Is This ALS? 15 04-07-2011 10:24 PM
Follow Up Questions to ALS Possibility ariz4me Do I Have ALS? Is This ALS? 0 10-16-2009 09:50 AM
Follow Up questions about what is happening to me Trevor Do I Have ALS? Is This ALS? 1 08-31-2009 01:20 PM
Clean Neuro Exam - Follow Up Question hrb02 Do I Have ALS? Is This ALS? 3 04-19-2009 10:43 PM
Please help with questions of the Neuro tmarino Do I Have ALS? Is This ALS? 11 10-17-2008 08:51 AM
update on neuro follow-up lydia Do I Have ALS? Is This ALS? 18 09-20-2008 12:54 PM


All times are GMT -5. The time now is 08:29 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