How Did the Progression Occur
- Status
- Joined
- May 9, 2016
- Messages
- 1,529
- Reason
- Lost a loved one
- Diagnosis
- 06/2016
- Country
- US
- State
- MN
- City
- Minneapolis
October 2015 - Tons of leg cramps while working on a construction project. Being very fit and use to such work this was a little odd, but at 65 we attributed it to age.
February 2016 - Tripped and fell on steps, hurts left knee. Again, odd given his grace and coordination.
February/March 2016 - Injury is not improving, complains of walk "feeling funny", tired legs.
April 2016 - We finally figure out he left toes will not raise fully, sees the Dr.
May 2016 - Clinical weakness observed in right ankle as well as injured left leg, sustained faciliation observed in arms and legs, leg cramps more severe.
June 2016 - Observed and clinical weakness in left hand, slight swallowing issues, leg weakness progressing. Diagnosed 6/30/16.
February 2016 - Tripped and fell on steps, hurts left knee. Again, odd given his grace and coordination.
February/March 2016 - Injury is not improving, complains of walk "feeling funny", tired legs.
April 2016 - We finally figure out he left toes will not raise fully, sees the Dr.
May 2016 - Clinical weakness observed in right ankle as well as injured left leg, sustained faciliation observed in arms and legs, leg cramps more severe.
June 2016 - Observed and clinical weakness in left hand, slight swallowing issues, leg weakness progressing. Diagnosed 6/30/16.
carex
Active member
- Joined
- Mar 12, 2016
- Messages
- 48
- Reason
- PALS
- Diagnosis
- 10/2015
- Country
- Us
- State
- FL
- City
- Melbourne
Wife noticed occasional pronunciation problems 01/15
I recognized slurring 03/15
Started evaluation (assorted tests) after returning from a consulting contract 07/15
Experiencing worsening slur and slight muscle twitching 09/15
Confirmed Bulbar Onset ALS (second opinion) 10/15
Excessive siliva secretion 12/15
Admitted hospital with breathing issue, one week, 01/16
Admitted VA hospital ALS evaluation, one week, 01/16
Released VA for weekend 01/16
Returned VA hospital with pneumonia 01/16
Released VAhospital 02/16
Gradual increased Silvia and Mucus issues 03/16
Botox injections (re siliva) 05/16
Excessive mucus flow 06/16... Present
I recognized slurring 03/15
Started evaluation (assorted tests) after returning from a consulting contract 07/15
Experiencing worsening slur and slight muscle twitching 09/15
Confirmed Bulbar Onset ALS (second opinion) 10/15
Excessive siliva secretion 12/15
Admitted hospital with breathing issue, one week, 01/16
Admitted VA hospital ALS evaluation, one week, 01/16
Released VA for weekend 01/16
Returned VA hospital with pneumonia 01/16
Released VAhospital 02/16
Gradual increased Silvia and Mucus issues 03/16
Botox injections (re siliva) 05/16
Excessive mucus flow 06/16... Present
Margesmn
Active member
- Joined
- Mar 23, 2016
- Messages
- 66
- Reason
- PALS
- Diagnosis
- 11/2015
- Country
- US
- State
- MN
- City
- Minneapolis
7/2014-tripped and fell
1/2015-PT for knee injured in fall
2/2015-walk feels funny
3/2015-noticed twitching in legs
5/2015-extreme fatigue sets in
7/2015-PCP refers to Neuro
8/2015-Nuero thinks HSP, refers to Mayo for second opinion(drop foot and dirty emg)
11/2015 Dx confirmed. Fatigue, and leg weakness
12/2015-stopped driving due to leg weakness, using walking stick
1/2016-using walker, manual wheelchair for long distances, breathing at 85%
2/2016-more fatigue and leg weakness, quit working
3/2016-legs continue to weaken, notice weakness in hands
4/2016-using manual wheelchair more due to falls, breathing at 76%
5/2016-manual chair full time, more weakness in hands, notices diaphragm weakening
6/2016-receive bipap (after sleep study) and PWC, still able to do standing transfers, hands noticibly weak, lost fine motor, trunk muscles weakening, speech starting to change
7/2016-legs are pretty much done, standing transfer not always successful, fingers curling on one hand, trunk muscles and diaphragm weaker.
Sometimes the progression feels so fast. Writing it out helped. Thanks!!
1/2015-PT for knee injured in fall
2/2015-walk feels funny
3/2015-noticed twitching in legs
5/2015-extreme fatigue sets in
7/2015-PCP refers to Neuro
8/2015-Nuero thinks HSP, refers to Mayo for second opinion(drop foot and dirty emg)
11/2015 Dx confirmed. Fatigue, and leg weakness
12/2015-stopped driving due to leg weakness, using walking stick
1/2016-using walker, manual wheelchair for long distances, breathing at 85%
2/2016-more fatigue and leg weakness, quit working
3/2016-legs continue to weaken, notice weakness in hands
4/2016-using manual wheelchair more due to falls, breathing at 76%
5/2016-manual chair full time, more weakness in hands, notices diaphragm weakening
6/2016-receive bipap (after sleep study) and PWC, still able to do standing transfers, hands noticibly weak, lost fine motor, trunk muscles weakening, speech starting to change
7/2016-legs are pretty much done, standing transfer not always successful, fingers curling on one hand, trunk muscles and diaphragm weaker.
Sometimes the progression feels so fast. Writing it out helped. Thanks!!
edschia
Active member
- Joined
- Mar 1, 2016
- Messages
- 59
- Reason
- PALS
- Diagnosis
- 01/2016
- Country
- US
- State
- PA
- City
- Wilkes Barre
My problems started at least two years ago when I realized I could barely walk a few blocks. I had a heart attack 15 years prior when I was 40 so I went to my cardiologist and he ordered the array of tests..EKG, stress, cardiac cath, blood draws. I was in AFib a lot of the time so he then ordered a pacemaker to be put in. I still had trouble walking and went to my PCP after falling a few times. He ordered xrays and CT scans only to see there was a problem w/my left knee. On to Physical Therapy and all the while I was thinking that everyone was missing something. I am also a diabetic but very controlled. On to July 2015 when I was away in SC and started feeling terrible. In addition to my trouble walking I did not feel like eating or rreally doing anything. I told my husband we needed to go home and called my PCP. Sat in the office and when they called my name I was unable to stand. Dr called ambulance and after much testing determined that my kidneys were only working 3% after working around 38% for the last 8 yrs. On to dialysis, then a neuro came in and asked if I would let him do an EMG. I said ok and after test he told me I may have ALS and I should go to Hershey which is the nearest ALS accredited clinic. After a month in the hospital on dialysis my kidneys miraculously started to function and I ws taken off dialysis and sent home. Went to Hershey, using cane, and head of neuro who was wonderful said I didn't have all the markers for ALS. I was elated. He said come back in 4 months, repeat EMG and now a diagnosis of ALS. My involvement is still only legs, drop foot, using AVOs and walker. Some days just waiting for the next ball to drop but trying to enjoy each day.
- Status
