Status
Not open for further replies.

lynnb0831

New member
Joined
Aug 13, 2008
Messages
6
Reason
Learn about ALS
Country
US
State
TX
City
Corpus Christi
My symptoms started about a year ago while walking down stairs. My calf muscles locked up throwing me backwards. Slowly, my legs began to get weak. If I am startled, they stiffen and I fall. It progressiviely got so bad that I couldn't walk around people or cars because they were so stiff. If I was at home it was better. Finally, I couldn't even walk at home...anytime I had to step down or over something it stopped me in my tracks even things like a curb...my legs wouldn't move. I had to hold on to anything I could grab just to move around. They don't hurt at all. If I am sitting, they are fine and I can move them easily. Getting up from a chair is very difficult though. No other symptoms that I think are related though. My neurologist can't diagnose it. Valium helps alot but the symptoms are still there. Does anyone have similar problems or know what this could be?
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Lynn,

What kind of nueroligist are you seeing is it a nueromuscular specialist?
Have they looked into stiffman syndrome?
 

lynnb0831

New member
Joined
Aug 13, 2008
Messages
6
Reason
Learn about ALS
Country
US
State
TX
City
Corpus Christi
I am seeing a neurologist...I don't think there is a neuromuscular specialist here and if there is...I don't know how to find one. They are not listed in the phone book. I found Stiffman's Syndrome (Stiff Leg Syndrome) when I was researching my symptoms and it was really close to what I have so I faxed it over to him...my GAD count was higher than normal but not real high so he is not ruling it out. Actually, the only things he has checked me for are the things I have mentioned...MS, Myotonia Congenita, MD...It is so frustrating! He is a specialist for goodness sakes! Oh...My husband says I have slurred speech sometimes but I don't notice....not sure if that helps. Do you know anything about Stiffman's? If so, please share. I am desperate. He has me on valium right now and that helps alot! I can still feel my symptoms though and if I am late taking a pill, the symptoms are back full force. I really don't want to be taking those the rest of my life though.
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Lynn,

How long have you been on valium? Slurred speech is a common side effect of valium.
Nuerological stuff can take a while to diagnosed. Do you have any large teaching university hospitals near you?
They will have nueromuscular speacialist that see this types of diseases more then a general nueroligist.
Another disease to research would be HSP and its doesn't have to be heritary it could be sporatic.
I don't no much about stiff person syndrome besides what I read online while researching. Some of the things you said made me think of that.

If you don't mind me asking how old are you?
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi lynn. If you go to www.alsa.org and look under In my Community it will tell you the best places in Texas to be evaluated. Sometimes it takes a doc who see's dozens of patients per week with odd symptoms to get a good exam and diagnosis. Hope this helps.

AL.
 

Sammantha

Senior member
Joined
Aug 11, 2007
Messages
501
Country
Uni
State
NC
City
Newport
Hi Lynn, just like you thought... To me it sounds like Myotonia Congenita. I read that during stressfull or quick movements your body locks up and you cant move. That is very scary and dangerous i hope you get help! Best wishes, Sammantha

Perhaps Parkinson's, i dont know you might have to research that.
 

lynnb0831

New member
Joined
Aug 13, 2008
Messages
6
Reason
Learn about ALS
Country
US
State
TX
City
Corpus Christi
Hi Crystal,
No...I don't mind...I am 45 years old. I do have other things going on but I wouldn't think they are related. I have epilepsy, T1 Diabetes & Pernicious Anemia...Sounds horrible but medication takes care of all of it so it's really just been a bump in the road. This is the one that is really scary since I don't know what it is and don't know what is to be expected. I have 4 kids & a business so I really need my health to cooperate right now. Hah! I looked up the HSP and I don't have those symptoms. My doctor is going to send me to a place in Houston but it is 4 hours away. As many times as I have gone back and forth here trying to figure it out...I can't even imagine going back and forth to Houston...Uuugghh!
 

lynnb0831

New member
Joined
Aug 13, 2008
Messages
6
Reason
Learn about ALS
Country
US
State
TX
City
Corpus Christi
Sammantha,
The MC is the perfect fit but I just developed these symptoms at 44 years old and MC starts in childhood so it has been dismissed. I have checked into Parkinsons B4 but that doesn't seem to be it-for now anyway. I have no tremors at all, just problems with leg movement.
 

wright

Very helpful member
Joined
Jan 12, 2008
Messages
1,160
Country
US
State
xx
City
xxxx
You have pernicious anemia AND Type 1 diabetes? Those are two conditions that are known to cause peripheral neuropathy and the diabetes causes it because of circulation problems . . . and circulation problems can account for a multitude of other conditions.

What kind of tests have you had and what have they shown?
 
Status
Not open for further replies.
Top