- Status
Duker52
Distinguished member
- Joined
- May 22, 2016
- Messages
- 119
- Reason
- PALS
- Diagnosis
- 04/2016
- Country
- US
- State
- Virginia
- City
- Alexandria
I, too, cried many tears. It's a terrible diagnosis to hear, but after a while the impact lessens. And this is a great forum -- so many knowledgeable people who have been touched in one way or another with this horrific disease. Everyone here is your support network. Bill
tripete
Very helpful member
- Joined
- Dec 5, 2014
- Messages
- 1,002
- Reason
- PALS
- Diagnosis
- 12/2014
- Country
- US
- State
- PA
- City
- Lancaster
Sorry your here. I use to drive an 1100R. Can you still ride your GS? My advice is to enjoy all the days you can. Don't focus on the future or the losses but on what you can do and who you have.
- Joined
- Jul 25, 2015
- Messages
- 1,606
- Reason
- CALS
- Diagnosis
- 07/2015
- Country
- US
- State
- tx
- City
- Dallas
I am sorry to welcome you here. It's such a shock to hear the diagnosis. We all cry with you so you are not alone. I hope you continue to come to this forum. Sometimes, reading is all we can do and other times posting helps. We are in this fight together and you can count on all of us.
G650gs
New member
- Joined
- Jul 16, 2016
- Messages
- 6
- Reason
- PALS
- Diagnosis
- 06/2016
- Country
- US
- State
- VA
- City
- Woodbridge
Pete,
Unfortunately no my last ride was June 2015 just before a total knee replacement. I thought that after five months of recovery I would be able to ride. Now it looks like my motorcycle tour of Ireland will have been my last ride.
Unfortunately no my last ride was June 2015 just before a total knee replacement. I thought that after five months of recovery I would be able to ride. Now it looks like my motorcycle tour of Ireland will have been my last ride.
Atsugi
Moderator emeritus
- Joined
- Jan 11, 2011
- Messages
- 5,921
- Reason
- Lost a loved one
- Diagnosis
- 12/2010
- Country
- US
- State
- FL
- City
- Orlando
Hi. Welcome.
My wife was my PALS. One day she just tripped. No warning, no sensory clues at all. Just the leg stopped working. Went straight to the EMG and saw ALS bright as day.
Feel free to introduce yourself. What led you to go to the doctor and how did she diagnose you? Do you have someone to help you and care for you when the time comes?
Knowing these things will help us all understand the varieties of ALS and respond appropriately.
GregK
Moderator emeritus
- Joined
- Jan 29, 2013
- Messages
- 3,295
- Reason
- PALS
- Diagnosis
- 11/2012
- Country
- US
- State
- CO
- City
- Colorado Springs
Hi GS,
Would you give us a few more details about the path that got you here, plz?
What were your symptoms, how long did it take to Dx (diagnosis)?
Flesh things out so we have a better idea who we're talking to ... ?
we sometimes get new members who aren't who they appear on the surface; it makes some members wary.
Would you give us a few more details about the path that got you here, plz?
What were your symptoms, how long did it take to Dx (diagnosis)?
Flesh things out so we have a better idea who we're talking to ... ?
we sometimes get new members who aren't who they appear on the surface; it makes some members wary.
G650gs
New member
- Joined
- Jul 16, 2016
- Messages
- 6
- Reason
- PALS
- Diagnosis
- 06/2016
- Country
- US
- State
- VA
- City
- Woodbridge
How I got here
June 2015 total right knee replacement
October 2015 completed therapy and discharged medically from recovery of knee replacement
December 2015 noticed unable to lift right foot without assistance started using cane
December 25 and 26th had first two falls, fell forwards catching foot on carpet
January 2016 return to orthopedic doctor and started physical therapy
Physical therapy referred me for orthotic saw foot and ankle specialist who then referred me to a neurologist
Foot and ankle specialist diagnosed drop foot on right foot
February 2016 neurologist conducted first EMG on right leg only, determined there was nerve loss on exterior right knee on the perineal nerve
March 2016 had surgery on the right exterior leg to release perineal nerve, surgery showed scar tissue along approximately 5 inches of the perineal nerve
April 2016 fell down six steps from upstairs no significant damage to knee surgeries but sustained significant lump on back of head and significant muscle soreness
May 2016 returned to the neurologist due to additional falls neurologist recommended MRI of Brain, cervical and thoracic and performed nerve study and EMG of all limbs
Late May 2016 sustained concussion after another fall; all MRIs were negative
June 15, 2016 noticed minimal periodic twitching in some extremities
June 16th 2016 was diagnosed with ALS and referred to GWU hospital ALS clinic
July 6 GW ALS clinic performed another nerve study and EMG and confirmed diagnosis of ALS
July 15, 2016 first visit to ALS clinic
In my opinion my progression has been rapid, as of today I have very little use of upper limbs, can pivot only when transferring and regularly have to use bedside commode or bedpan. Am unable to feed self or assist in any daily care
June 2015 total right knee replacement
October 2015 completed therapy and discharged medically from recovery of knee replacement
December 2015 noticed unable to lift right foot without assistance started using cane
December 25 and 26th had first two falls, fell forwards catching foot on carpet
January 2016 return to orthopedic doctor and started physical therapy
Physical therapy referred me for orthotic saw foot and ankle specialist who then referred me to a neurologist
Foot and ankle specialist diagnosed drop foot on right foot
February 2016 neurologist conducted first EMG on right leg only, determined there was nerve loss on exterior right knee on the perineal nerve
March 2016 had surgery on the right exterior leg to release perineal nerve, surgery showed scar tissue along approximately 5 inches of the perineal nerve
April 2016 fell down six steps from upstairs no significant damage to knee surgeries but sustained significant lump on back of head and significant muscle soreness
May 2016 returned to the neurologist due to additional falls neurologist recommended MRI of Brain, cervical and thoracic and performed nerve study and EMG of all limbs
Late May 2016 sustained concussion after another fall; all MRIs were negative
June 15, 2016 noticed minimal periodic twitching in some extremities
June 16th 2016 was diagnosed with ALS and referred to GWU hospital ALS clinic
July 6 GW ALS clinic performed another nerve study and EMG and confirmed diagnosis of ALS
July 15, 2016 first visit to ALS clinic
In my opinion my progression has been rapid, as of today I have very little use of upper limbs, can pivot only when transferring and regularly have to use bedside commode or bedpan. Am unable to feed self or assist in any daily care
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