i have pls

[VDELOCH]

Back from seeing my new neuro an she said yes i have pls i really wanted to cry

but i didnot i guess life as i knew it want be the same .I told her about the forums

and that it seems like everyone that i chated with is still walking, how an why i stop

walking in less than two week after i started with symtoms she said it can happen

that way . I didnot know what spasticity was and she said my legs or so stiff an that is

spaticity so she ask me the dosage on my baclofen it was 40mg a day so she said that

was not enough so she change it to 60mg she also said i may get more movement i

have to she her in 3weeks she also told me about the baclofen pump. Is there anyone

out there with the pump and what is your baclofen dosage.

 

[AKmom]

so sorry that you have the diagnosis of PLS, but glad that it was a quick diagnosis and not ALS. If the spasticity doesn't bother you much, why would you need a pump? I take baclophen and tizanidine for when I cramp up or get too stiff, but some stiffness is good for you, keeps the muscles from turning to mush. I had lots of muscle tone up until about 6months or so ago. Then all the sudden I lost 10lbs and now everything is sagging. I still get cramps and sometimes I am very spastic where I cannot relax enough to be comfortable, but those are getting rarer as I loose my ability to walk.

 

[VDELOCH]

I really dont know much about this pls i dont have any pain but the Dr added another 20mg to my daily baclofen she saided it
might help me to walk a little so tizanidine is a drug i dont know about ,dose spastic supose to be painful?should i have lost my ability to walk so soon?should i be looking for leg braces special devices?

 

[AKmom]

tell me what happens when you try to walk. Are you able to stand? Is it hard to get your legs to move forward?

Spasticity is not painful, just uncomfortable as nothing will move easily. When I am spastic my body locks into positions such as my right arm will curl upward and the wrist will turn the hand down and my fingers will lock. My legs will be stiff and not want to move forward when I try to walk. My back and neck will get stiff and I am very uncomfortable.

Cramps hurt, they happen when when I am spastic already and my body wants to stretch or I move the wrong way and a muscle decides to cramp on me like a really bad charley horse. They happen more when I am particularly active and out and about.

Baclofen helps with the spasticity by relaxing the muscles just a tad. I can walk better if I have a baclofen. Tizanidine is also a muscle relaxer, but I usually only take it at bedtime as it makes me sleepy. I use it to keep the cramping at bay. It works a little differently than baclofen and works longer than baclofen. If I do not take it at night, I have the tendency to stretch during sleep and wake up with severe pain from cramps several times a night.

What did the neuro doc say is the next step? Leg braces are not needed if you do not have foot drop. Canes might be in order if your balance is off. Thus....what happens when you try to walk?

 

[AKmom]

I just read your other post when you were wondering if you really had pls. I am wondering now how they were so quick to diagnos you with pls based on your history? It was suggested in that thread that you ask the first neuro doc about the transverse myelitis and why that was considered. I think that is a good idea. Same with the other neuros and pls.

I know for fact that some docs who give second and third opinions might just read over what another doc has done and then not really search very deep beyond that and comfirm based on that. As said before, pls takes years to diagnose. I have been diagnosed with RA two times by two rhuemy docs, yet both retracted their diagnosis after treatment proved to be non effective. One based their diagnosis on one blood test that showed a high level of RA factor, yet it was never seen to be that high again. The second RA doc based it on the first RA docs opinion. Both changed their opinions after 2 years of treatment that failed to improve things. They said in the end, its neurological.

So please look into it further by asking the docs the questions that Aly in the other thread suggested.

 

[VDELOCH]

I can stand for about 2min than my body starts to lean too one side i have to grab hold to somthing to pervent from falling
when i try to take a step its like i cant pick my leg up my new neuro said as of right now she will do know new testing and she will see me again Feb,13 whats your daily dosage of baclofen.

 

[AKmom]

I can take up to 60mg a day. However I have cut it down and found that 20 to 40mg works for me best depending on how much I am out and about. I definatly take it at bedtime so I get better sleep. I found if I take it three times a day, then I am not as active and that is not acceptable to me.

 

[notme]

Hi

I went and read your other posts and am very confused. If you were given an MRI and diagnosed with transverse myelitis, where in the world did PLS diagnosis come from?

Recovery from TM takes months, not weeks. Your residual leg weakness could well be from the TM, even if it was treated. They should have also done testing to be sure of the cause of it. Some is idiopathic, having no known cause, but sometimes it's accompanied by an autoimmune condition. It sounds like your doctor isn't at all on the ball here...and that's something rarely say.

Can you tell us exactly what tests have been done, and the time progression of all the symptoms? I would not suggest even considering a Baclofen pump at this point, when it sounds like your doctors diagnosis is iffy at best.

I know you've had a second opinion, but in this case, I would go for a third!

Was the transverse myelitis diagnosis based on inflammation seen on an MRI? If not, how was it diagnosed?

PLS wouldn't start as suddenly as your issues did, but TM could. Please find a new doc or go back to the one that diagnosed and treated the TM.

Be safe and avoid falls in the meantime. A wheeled walker might be a good idea.

 

[VDELOCH]

Buttock started going num in the last week of September of 2010. Then in the next 3 days the foot started getting num. Went to primary Doc. she did some blood work, x-ray on the back and said she would call me when blood work comes back. Second week in October I am walking with a cane. Primary Doc. called and said blood work looked good. Then she sent me to Neuro and he did MRI of brain and spine. Three days later called me with results said it was some bruges disc, nothing to worry about. So I said I need to see the Neuro so he can tell me about my MRI. So I did. When I met with him we went over the MRI. This is about the last week in October of 2010, cant walk at all. Put me in the hospital over night to have CT Scan and spinal tap. Its now November 2010 cant walk at all. Came home from hospital got a call in three days giving orders to start steroid treatments. Steroid Treatments cosist of infusion threw veins two times a day for five days. Did get a little mobility back. Was sent to P.T. in Feb. 2011. Went beck to Neuro in Feb. 2011 he said to continue your P.T., see you in three months. May of 2011 get new Neuro I told him the doctor said I have T.M. He looks at my previous MRI and he says "No way you have T.M. at all. I think its PLS" Had another MRI of the spine and brain. Neuro called me in to go over the MRI's and said "Didnt see much I think its PLS. We'll send you to Huston" Went to Huston September 2011. Stayed for two night and three days. Had EMG and Nerve conducting test. On third day Neuro said it was PLS.