Maddy
Member
- Joined
- Jan 28, 2008
- Messages
- 22
- Reason
- DX UMND/PLS
- Diagnosis
- 06/2007
- Country
- US
- State
- NJ
- City
- Sea Girt
Hi. I have been reading these threads for about 6 mths now but haven't actually shared my story. As briefly as possible, I started noticing slurred speech during the summer of 2006, made worse by a half a glass of wine. Also, I was an avid runner and started to feel "cloddish" in my thighs while running around the same time. I would ask my friend "do I look like I am running funny?" or "do I sound funny?" By march '07 I notice when I was in NYC one night that I was super stiff trying to run across the street to a restaurant, once inside where it was warm I started to thaw out and was better after 5 min. Went to my gynecologist in March and told her these "minor" symptoms I had noticed and she got on the phone right away and sent me over to NYH-Cornell that day. I really thought it was nothing but the neuro put me thru all the tests that you all know so well, most were neg..the MRI of brain showed an "inflammation of something or other" the EMG was negative. By June 2007 the neuro said "if I were a betting man, I would bet PLS" he put me on Rilutek (thought that was just for ALS) 2 weeks after starting Rilutek I ended up in hospital with fever of unknown origin, atrial fibrillation, Congestive Heart Failure, pneumonia, arthralgia...discharged after 2 weeks (almost died and prior I had been the healthiest 46 y.o mother of 3 ever) more tests, went to Columbia Presbyterian to see Dr. Linda Lewis in September "07 -because I had fasisculations she couldnt rule out ALS but once she reviewed my brain MRi and EMG with head of ALS she called me and said def not ALS, probably PLS and I will see you in 20 years! Started Minocin bc of a drug study that showed it could slow down progression of ALS. My symptoms progressed rapidly and stopped Minocin after 6 months -dont know if the Minocin sped up symptoms or just natural progression of disease. Fast forward to now...My balance is poor and I have fallen about 5 times (not bad) one requiring 15 stitches in chin, my legs are super stiff-i walk like the Tin Man-but like everyone else it is worse in cold weather (60 degrees is cold to me now!). I can walk up steps fairly well but am so stiff going down and it takes forever! Need someones arm to get to car because any minor decline in sidewalk or a simple curb is almost impossible to walk down. My left side is more affected, my left hand is very weak and the OT said the Intrinsic muscles are affected. My hand looks spastic when I itch my nose or some action like that. My speech is very slurred, but still understandable...it gets worse as day goes on and almost impossible after a glass of wine. Emotional lability has been a problem for as long as I can remember-at least 21/2 years-I smile constantly and inappropriately, I laugh uncontrollably and the crying jags have been few and far between but bad when they occur. I did have "frozen shoulder" left side back in Dec '06 and doctors refuse to link the two but I know it is related to PLS. Stress brings on the muscle rigidity to the point where I feel like I have Parkinsons, I cant move. I have clonus in both legs and a tremor in my left arm starting in my R. I cant walk on the grass, gravel, at night, up or down a curb without assistance. Otherwise I am a normal, happy, wife and mother of 3 (my oldest son who is 17 has cerebral palsy and is in a wheelchair and cant talk!) OK you all get the picture, I sound like so many of you out there it is a comfort to know I am not crazy.
I haven't gone for a follow up EMG since the first one in March 07 because I really don't want to know if there are changes.
(By the way, my son with CP is gorgeous and he will be going to college next year)
I am being followed by my internist only bc I have been so healthy -ignorance is bliss.
Thank you for listening and sharing your stories which have helped me tremendously!
Sorry, that wasn't the least bit brief!
I haven't gone for a follow up EMG since the first one in March 07 because I really don't want to know if there are changes.
(By the way, my son with CP is gorgeous and he will be going to college next year)
I am being followed by my internist only bc I have been so healthy -ignorance is bliss.
Thank you for listening and sharing your stories which have helped me tremendously!
Sorry, that wasn't the least bit brief!