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sand

Member
Joined
Jul 14, 2008
Messages
26
Reason
DX UMND/PLS
Diagnosis
05/2008
Country
US
State
GA
City
Lawrenceville
I am very new to this site and also new to this terrible diagnosis, which has completely halted my life even though I have been suffering with a weak left leg since 2003 and a now weak left arm since last summer and I can no longer type with my right hand. My problem started with a herniated disc, which after surgery did not improve my leg problem. I have had dozens of test and it took a third neurologist to give me a diagnosis on May 28th of this year and I am still hoping he is wrong.

I am scared to death that this weakness will start on my right side. I can walk with a cane and do everything very slowly. I can still drive but only take short trips to shop in the morning when my body is not so tired to do things, but if I go out I am done for for the day. I spend most of my day in a chair with my legs elevated because of poor circulation in the left leg.

I am looking forward to a vacation to Aruba with my husband Aug. 2nd. It will probably be my last one.

Anyone else with PLS having these problems and can someone help me with what to expect in the future?
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Welcome to the forum. I am glad you found us. Please be patient and others will answer your request soon.
 

Whitsend

Distinguished member
Joined
Jan 8, 2008
Messages
105
Reason
PALS
Diagnosis
01/2009
Country
US
State
NC
City
Concord
Sand,

Check out this site: http://www.ninds.nih.gov/disorders/primary_lateral_sclerosis/primary_lateral_sclerosis.htm

You will learn a lot about what to expect.

Yes this is a horrible disease. Has your doctor put you on any medications to deal with the symptoms? Baclofen seems to be the drug of choice.

It won't make the disease go away, but may help you cope better with the symptoms.

Welcome to the group. Although you won't like the reason you're here, you're bound to learn some coping skills and maybe even make a few friends.

Again, Welcome!:-D
 

sand

Member
Joined
Jul 14, 2008
Messages
26
Reason
DX UMND/PLS
Diagnosis
05/2008
Country
US
State
GA
City
Lawrenceville
Sand,

Check out this site: http://www.ninds.nih.gov/disorders/primary_lateral_sclerosis/primary_lateral_sclerosis.htm

You will learn a lot about what to expect.

Yes this is a horrible disease. Has your doctor put you on any medications to deal with the symptoms? Baclofen seems to be the drug of choice.

It won't make the disease go away, but may help you cope better with the symptoms.

Welcome to the group. Although you won't like the reason you're here, you're bound to learn some coping skills and maybe even make a few friends.

Again, Welcome!:-D
I have read a lot about PLS, but really nothing is said about how fast it progresses. Right now I can only type with one hand and have trouble walking with a cane for only short distances. It seems to affect only my left side and I hope it stays there because I don't know what I would do if it was on both. Is it going to go to the right side? I am on neurontin (300mg.) 3 tablets 4 times a day, rilutek-50mg. twice a day, hydrocodone-650 mg. when needed, vit. C 1000mg., vit. E 400mg., B-12, Fish Oil and whatever else I feel will help. I have a vitamin supply you wouldn't believe. I guess I have had this since 2003 when my herniated disc was found and surgery did not help my left leg. What is Baclofin for?
 

sand

Member
Joined
Jul 14, 2008
Messages
26
Reason
DX UMND/PLS
Diagnosis
05/2008
Country
US
State
GA
City
Lawrenceville
Meds

Hi,
It seems I have been on Neurontin forever. I am now up to 300mg. (3 tablets, 4 times a day), rilutek- 50 mg. twice a day, hydrocodone- 650 when I need it. I also take vit c, vit E, vit D, B-12, Fish oil, Centrum and whatever else I have time to take. It seems I am taking something at mealtime all the time. My problem is also that I am sometimes to tired to make my self something to eat. I will be seeing my general doctor next Monday to discuss lithium after my neurologist said he hasn't heard of the treatment. I do like my third neurologist since he was the one who found out what was wrong with me.

I don't have speech probglems yet, just left side affected, both arm and leg and walk for only short distances with a cane. I am thinking of getting a rollater walker to help in the house.
Sand
 

Whitsend

Distinguished member
Joined
Jan 8, 2008
Messages
105
Reason
PALS
Diagnosis
01/2009
Country
US
State
NC
City
Concord
Mine started on the left side too. First my ankle/foot then the whole leg. Then progressed somewhat to right leg. Then to left arm, hand and fingers.

I use a rollator/walker also. However, I really can't go too far with it. My arms get tired of holding up my whole weight.

I have felt the right arm lately is beginning to respond similar to the left.

My symptoms started in 2004. Maybe 2003 and I just attributed them to something else or completely ignored them.
 

sral

Distinguished member
Joined
Sep 15, 2007
Messages
289
Reason
Learn about ALS
Diagnosis
n/a
Country
CA
State
ontario
City
toronto
Whitesand,

Your symptoms started in 2003 and now 5 years later you're still able to walk and have function of your right side. I'm glad the progression has been slower for you.

By the way, what's a rollator cane?
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Sand I sure dont know how and why you are on Rilutek . Originally they Put ALSers on it when they knew they didnt have much time left .Did your doc. Make you aware of what it does ?This certainly a new one for me .If you look it up you can see . Geo
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Neurontin? Good or Bad?

For those of you taking Neurontin you might want to go read the thread at:
https://www.alsforums.com/forum/showthread.php?t=1355&highlight=neurontin

I am not saying it is a bad drug, I am not a Doctor. I am just giving you my opinion of my experience with this medication. I have learned after 19 years of various medications for nerve damage to my lower back, from an airplane injury, to check out every medication on the web and learn as much as I can about it. I take no single person word for information, but research it myself it at all possible.

I have to, because, I am allergic to many medications and have had some very bad side effects, such as my heart stopping. That will get your attention if nothing else does.
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Thats OK if you dont respond to the taking Rilutek ,I'll understand . Geo
 

sand

Member
Joined
Jul 14, 2008
Messages
26
Reason
DX UMND/PLS
Diagnosis
05/2008
Country
US
State
GA
City
Lawrenceville
Sorry Geo,
I am still trying to learn how this site works. After my PLS diagnosis on Mat 28th the neurologist put me on Rilutek and I didn't know anything about the drug, but was very anxious to try anything. I just finished reading about it and I will be checking it out more with my primary doctor on Mon. along with questioning my lomg term use of neurontin that I started in 2003 along with my back problem.

So what do you know about Rilutek and thanks for responding? I have been spending time all over this site trying to learn all I can.
Have a nice day,
Sand
 

Shane the Pain

Active member
Joined
Jul 12, 2008
Messages
97
Diagnosis
05/2007
Country
US
State
CA
City
San Diego
Sand what is Up ?

Remember attitude helps alot, as does wine. Sorry for your pain. Do you drink Limu or Gojiberry for energy, also B-12 & CQ-10 ?
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hello sand

i truly believe you are better getting by on as little meds as you can manage.
too many and wrong ones just complicate things or make them worse.
i read your post and thought you should not be on a als drug if they think you have pls.
everyone is different in progession but i know from talking to many many pls'ers the first few years are the worst and then it settles down a bit.
so you may be progressing fast now but give it time.
after nearly 8yrs on baclofen i am no way near as crippled as i was with spasms if i take things at a slow pace.
due to the bulbar involvement now ,i am on a soft food diet(puds and high calories) and can only eat small amounts but ofton throughout the day to keep my weight from dropping.
yes it sucks,but you learn to adapt and find a balance.
i would consider coming of the als meds if i was you and see if theres a difference,but please do this under your docs guidance.
take good care
caroline:)
 

sand

Member
Joined
Jul 14, 2008
Messages
26
Reason
DX UMND/PLS
Diagnosis
05/2008
Country
US
State
GA
City
Lawrenceville
Hi Shane,
I do take Co Q-10 and B-12 along with a lot of other vitamins. My attitude right now is that I am mad at the world. It seems after finally being diagnosed no one really knows what drugs I should be on. Example- I just read Hydrocodone should not be taken if one is on Neurontin, I am taking Neurontin and the neurologist knows this and still prescribed Hydocodone for when my back hurts. I can't wait to talk to my primary doctor on Monday.
Yes, wine helps.
 

sand

Member
Joined
Jul 14, 2008
Messages
26
Reason
DX UMND/PLS
Diagnosis
05/2008
Country
US
State
GA
City
Lawrenceville
Good Morning Olly,
I agree about being on less meds would be better, but I just went along with what so many different doctors prescribed and they all knew what I was taking before I saw them. I will be checking on why rilutek was prescribed the day I was diagnosed with PLS. I never heard of it and cried for days after reading about it. I want to get better and now know for certain I won't and I will never be able to walk normal again. Thank goodness it is only on my left side for now. No telling what I will do if I can't walk ever again. I do not have spasms and please clue me in on bulbar involvement.
Sand
 
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