Things are just starting to sink in

[LinCan]

Hello. I have followed posts here, as concerns have been with me for some time. In 2010, summer, I had noticed dragging of my left foot - slight, but required attention. Also left leg did not co-operate or move as easily as my right. Dr. Did MRI of brain and lower back - both clear (age-related changes in spine) Dr. Said it was probably nerve damage behind knee. In April 2012 had TKR of right knee- followed by clonis and spacicity in left leg. Knee progressed O.K., but still had to use walker due to instability and balance problems.
MRI of brain and cervical spine show nothing significant so am being referred to neurologist for EMG/NC studies- soon I hope. Is this the definitive test for ALS? IF it's clear could that change in the near future? Does PLS show up on an EMG.?
I really appreciate any answers. I have just been prescribed ciprelex for depression: is this a good choice?

Many thanks for any help.

 

[Alyoop]

Firstly the question about the test being definitive.... It Can be if the abnormalities see in AlS are demonstrated in more than one area. Changes often show up in asymptomatic areas. The emg is supported by abnormalities on clinical examination.
PLS does not show on emg. Pls is diagnosed after a patient demonstrates spasticity and pathological signs and symptoms, progressing over 4 years and having not developed into ALS, during this time.
I wish you the best

 

[LinCan]

Thank you for your help, Alyoop. I guess this is a rather long and nerve-wracking process. I am amazed at the helpful, hopeful, and encouraging attitude of everyone battling this disease.
I hope I can muster even a small measure of this strength for the road ahead. Right now I'm not doing too well, and I haven't been diagnosed yet.

 

[Alyoop]

There are many many conditions that can cause foot weakness. You just thing positive thoughts until you have a diagnosis. I know it's very hard, but hang in there.

 

[LinCan]

Thanks again, Aly! I guess it's just waiting for my EMG now, and trying to stay positive and keep moving as much as possible till then.

 

[LinCan]

Just a quick update - My EMG/NC is set for Oct.22. My anxiety is starting to build again. At least I'll be a bit further along towards a diagnosis.

 

[Ms. Pie]

Hang in there LinCan! I know that's easy to say and not so easy to do. Try to stay busy. It might be something treatable! I'm sending good calm thoughts your way! Do you ever pray or meditate? That always helps me.

 

[momap53]

Waiting can be very nerve wracking. Hang in there and try to do some living in the meantime.

 

[HelenL]

Remember, its not ALS unless its nothing else.. its possible that its related to your spine issue? At any rate, good luck and try to live your life while you're waiting for the EMG. Keep us posted.

 

[Ms. Pie]

Well, I responded that prayer and meditation help me but it got moderated a few hours ago. Like Helen said, it might be something treatable so keep your chin up Sweets!

 

[Ms. Pie]

Must be my turn to be moderated tonight.

 

[LinCan]

Thank all of you so much for your kindness and support! My thoughts and prayers are with all of you who are struggling with this disease and still take the time and effort to help and encourage others. I will post when I find out more.

 

[Compass Rose]

Ms. Pie's advice is good. Keep busy. Seek out pleasant distractions - go to movies, listen to music, cook, ride your bike ... Whatever maks you feel happy and comforted. Be kind to yourself and try not to worry.

Wishing you good news on the 22nd. Take care.

 

[LinCan]

Hi Everyone,

I'm back with an update and some questions. I had an EMG on Oct. 22. the neuro said he sees no evidence of denervation at this point. However, due to my UMN symptoms of 2 and a half years, he suspects it might be PLS. Right now, I am both somewhat relieved and overwhelmed. I use a walker all the time, and due to living alone, am probably going to have to move to a place without stairs and with some level of physical support.

For now, I have a couple of questions:

If you start baclofen, what is a good beginning dose? Does it cause greater instability?

How long should I wait before another EMG? I see another neuro in December. should I ask for a full spine MRI, or are brain and cervical spine enough with UMN?

I find that even though I had a good EMG, I am experiencing random twitches - even now on one lip. I'm assuming from what I've read these may be from anxiety. ( I'm hoping that's the case.)

I really appreciate any input on these conditions, necessary action, etc.

 

[notme]

Hi

No one here should give you a baclofen amt, but the doc will it helps great.yvwith spasms. They usually start low and move up. Mime was combined with a benzo to help,with spasms.

PLS is a much better thing, I think, and between the 2, if my only options, what I am hoping for and what doc is thinking, I believe at this point.

Certainly with leg issues, an MRI is a good idea, as spine probs can cause UMN stuff. Edit because I see you've already had MRI of your spine that showed nothing significant.

If yournclinicalmsigns were all UMN, are they just in your legs or in other area, too? as for the twitches, ignore them. Aly would be the first to tell you she has zillions. Bad ones show on EMG, ones you wouldn't even feel quite possibly.

I did have to move from a 2nd floor apt. As stairs were a no-go. I was told to always use a a walker, and got my handicap placard.

Falls are a risk, but I don't know that Bac. will make your balance worse. It doesn't seem to make me fall more.

PLS moves much slower, and they won't generally diagnosed iit til it's been 4 years to be sure no LMN stuff shows its ugly head.

You might notice you have less strength. I've found walking daily seems to help, but I don't dare go without the walker and use a scooter for stores.

They will watch you closely, probably seeing you every 6ms. Or so.

Try to relax and see if the meds help while you wait for a second opinion. I think my Bac. Was started at 20mg 2x a day, but can't remember anymore the starting dose.

Just be safe and avoid falls!