Questions from Newly Diagnosed

[citygal]

Hi all,
I'm 28 years old and newly diagnosed with spastic paraparesis. I have been having symptoms for a very long time and only recently saw several neurologists (including a neuromuscular specialist) because it was getting difficult to function and was given this diagnosis. Things really escalated when I fell at work and had to go to the ER in an ambulance. I haven't been cleared by neurologist to go back to work yet.
My question is, how do you explain this disorder to other people? I hadn't even told family members about it, and now I am faced with having to explain to coworkers why I am so stiff and clumsy. On the one hand I want to be open with people and answer questions (I'm tired of pretending that I feel ok) and on the other hand I don't want to be seen as "the sick one".
Another question I have (sorry!) is how much better I can expect to feel with treatment. My neurologist seems very vague when I ask her this. Thank you so much.

 

[millinero]

well sorry to dissapoint u Citygal ...but u are in the wrong forum with the wrong question....as spinal infection has nothing to do with ALS so u would not be able to get much help out here...hope u find answers somewhere else.
take care & keep well.

 

[Al]

Hi citygal. If you Google it you'll find out about it. It can be hereditary but has no relation to ALS.

AL.

 

[GlenBrittle]

CityGal ,
the easiest way to tell friends and co-workers is to write it up , including explanations in an email and send it to all of them. Mention that you dont want to talk about it unless you bring up the subject. It worked wonders where I work. Only my close friends asked for more info , which I glady gave. Head em off at the pass , it saves so much time , and you dont have to explain it over and over and over.

If you want , pm me your email address and I will send my msg that you could use as a template.

I am sad that you are suffering , but happy its not ALS. No matter what it is , its all about attitude and energy.

Glen

 

[breezee]

Hereditary spastic paraplegia - Wikipedia, the free encyclopedia

^ that sounds bad.

 

[Al]

Yes it does but it's not related to ALS.

AL.

 

[rkr63x4]

spastic pareperesis

I have had spastic pareperesis for several years now. My staff members at work have asked why i limp - my doc had told me that sp is a sister to MS. This will not kill me, just make getting around a little harder. That usually is good enough.
There is several things i can't do, jump, run or even walk very fast (don't get in a hurry) and also have zero balance.
The one thing I have noticed is that the shoes i wear make all the difference in the world. Can't stand to change (buy new) because it scares me so much. I work in a hospital and the waxed floors are going to be the death of me. Because I work in surgery, I can wear shoecovers - otherwise I think i would have to wear slick bottom shoes. Nothing that grips. But the tennis shoes i have to wear are the running shoes, because the foot drops, it is important to have shoes that have the natural curve upward of the toes. i have bought walking shoes and have fallen several times - not an option unless i will be outside (in the dirt).
I have also noticed that if i am hurting from pms, or a headache or anything, I CAN NOT WALK. I am on several medications, Baclofen for the stiffness twice a day, Lyrica for the nerve pain in my legs - twice a day, and even cymbalta for pain that would not go away with muscle relaxers, once a day. They would normally prescribe more but i am very sensitve to drugs and need very little. I have just been prescribed xanax (1/2 of the lowest dosage) for stress - i have a high stress job and it was making me hurt a little.
I have noticed that i have also had some of these symptoms for several years but because i was much more active than i am now - i think that would be why i was diagnosed so late in life.

 

[olly]

hi citygal and rkr63x4.
you are both in the wrong forum for questions and info,you need to be in the pls forum.
spastic paralysis is either ............hereditory/hsp effecting the lower body(though it can be sporadic) or pls which also effects upper body and speech(sporadic but rarely hereditory)
go to the pls forum and you will see i have put up the spf(spastic paraplega foundation)web site,i have a lot of info if you need any more.:-D