New member-PLS diagnosed in December

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snowbirds

New member
Joined
Jan 21, 2012
Messages
4
Reason
DX UMND/PLS
Diagnosis
12/2011
Country
US
State
Minnesota
I have had a weak right knee that buckles backward for 3 yrs. and more recently a weak, heavy right leg. Frequent spasms at night from the hips down both legs to the toes. Had all the mri's, lower spine, upper cervical, brain, EMG's, nerve conduction tests {which I'll be repeating in Feb}, positive Babinski, and all the blood tests normal except ANA which is positive. I'm walking pretty good but not without limping but leg gets real weak with more activity. I feel very fortunate at this time. I've learned more from this forum than from all my visits to the neuro.
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
Welcome aboard!
 

AKmom

Senior member
Joined
Jun 2, 2010
Messages
606
Reason
DX UMND/PLS
Diagnosis
11/2009
Country
US
State
Alaska
glad you found us. Sorry your having to deal with this disease though. Welcome to the board!
 

LouLou

Active member
Joined
Jul 11, 2011
Messages
91
Reason
DX UMND/PLS
Diagnosis
06/2011
Country
US
State
Washington
Welcome to our group! I know you will find this to be a great source of information and support. Sorry you are faced with this disease. I see you are from Minnesota. I grew up in Minnesota (Duluth) and lived in Mpls. for 10 years. Now we are in Washington. I hear that there are good doctors and clinics at the U of M. Good luck to you. God Bless You always.
 

snowbirds

New member
Joined
Jan 21, 2012
Messages
4
Reason
DX UMND/PLS
Diagnosis
12/2011
Country
US
State
Minnesota
Thanks for the welcome. My wife was born and raised in Duluth...Central HS. We are North of Mpls about 30 mi. May I ask what stage of pls you are currently? Also symptoms you have/had. Thank ou for the post.

Jack
 

LouLou

Active member
Joined
Jul 11, 2011
Messages
91
Reason
DX UMND/PLS
Diagnosis
06/2011
Country
US
State
Washington
Jack, I also graduated from Duluth Central in 1976. My husband was born and raised in North Branch, MN. Most of our family still lives in Duluth and North Branch. Small world isn't it?

My symptoms started in August of 2009. I noticed that my walk was "off" and my left leg felt stiff and had foot drop. My husband noticed in right away. Like I was slapping the pavement when I walked. I had fallen over backwards twice that Fall and after the second time, made an appointment with my primary care doctor. He did the routine MRI for MS but that came back normal. So I went to a neurologist and had a very extensive physical exam. This neurologist has been practicing for 35 years and is very good! After 2 visits he told me he thought it could be primary lateral sclerosis or hereditary spastic paraparesis. He then referred me to a neuromuscular specialist at the University of Washington. For 2 months I had several tests done. 2 MRIs - one of my cervical and lumbar spine, blood tests , spinal tap, EMG, etc. The preliminary diagnosis was PLS. Now I go to the University every 3 months for a check up. Actually I go tomorrow for one. Since my diagnosis in July, I have progressed slowly. I have fallen several times (backwards) and will talk more about that tomorrow. My left leg has had increased spasticity (Baclofen has helped for the most part), but a few weeks ago I felt like tin man walking. I had a great massage on my legs to loosen things up. It really helped and now I plan to do this on a weekly basis. I am moving slower these days and have been having some difficulty sleeping. I toss and turn after being in bed for 4 hrs. or so. My hips start to ache and just can't find a comfortable position. Everyone progresses differently with this. I felt really good in Aug-Oct this past year, and since then haveslowed down a bit more.

We are planning a trip to Minnesota in April, so if you would like we could exchange info and meet for coffee. I have not met anyone in person that has PLS. Take good care of yourself. I look forward to our friendship.

LouLou
 

seand777

Member
Joined
Jan 15, 2010
Messages
17
Reason
PALS
Diagnosis
10/2011
Country
US
State
IL
Hi Snowbirds. Welcome to the board and glad you found us. You have definitely come to the right place for support and chat with people who are very knowledgeable and helpful.

Sean
 

snowbirds

New member
Joined
Jan 21, 2012
Messages
4
Reason
DX UMND/PLS
Diagnosis
12/2011
Country
US
State
Minnesota
Thanks for all the info. Lots sounds the same especially the sore hps trying to sleep. I average 4 to 5 hrs. a night. April could work out but we may escape to Fla. to our winter abode after my wifes last chemo treatment on the 13th. of Feb. If that works out we may be coming back around the end of April. We would love to hook up though. Would a phone number exchang work for you? Maybe email address first. Whats your thoughts?

Jack
 

LouLou

Active member
Joined
Jul 11, 2011
Messages
91
Reason
DX UMND/PLS
Diagnosis
06/2011
Country
US
State
Washington
Jack,

Sorry to hear you are also dealing with health issues with your wife. I have sent you a friend request on this forum, so once you accept it we can exchange our contact information privately. We will be in MN in mid-April and then again in July, so hopefully one of those times we can meet. I look forward to this. Take good care of yourself and your wife. Enjoy your time in Florida. Sounds great!

LouLou
 
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