Old 05-17-2018, 07:28 AM #1 (permalink)
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Hello Everyone!
This is my first post so bare with me. I'll spare everyone the details that took me from Aug. 2016 to now but as of now my Neurologist believes I may have PLS. I have had one MRI, 2 EMG's, several blood test and my next visit with her is Sept. 25th. I am seeing another Neurologist on June 15th for a second opinion. Walking is difficult and very slow, my right leg is the weakest, I have leg spasm in both legs, some muscle jerks, it's starting to affect my arms and I'm loosing my grip in my hands. Loose my balance a lot and I get extremely exhuasted and weak after much activity. My reflexes are extreme and I get startled easily now. Going up stairs is a chore and takes me a long time. I use to play the drums but when I hit the bass drum my foot would bounce and not stop so I've put that on hold. My emotions are crazy, I was actually mad one day and I could not stop laughing, that was so, so frustrating but I look back now and laugh about it. Starting to have issues when I drink with it going down the wrong hole and choking. Well that's me right now. I realize everyone is different but are some of ya'll have some of the similiar issues? And is there any advice anyone wants to give me? I'm open for it.
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Old 05-17-2018, 05:22 PM #2 (permalink)
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Ask your doctor about Neudexta for the emotional lability (uncontolled laughing). I take a combination of Neudexta and a small dose (10 mg) of Escitalopram. Together the meds are enough to make the laughing/crying manageable.
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Old 05-18-2018, 01:25 AM #3 (permalink)
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Thanks Gorby, I'll discuss it on my next visit. They don't happen very often but when they do it feels a little crazy.
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Old 05-18-2018, 02:31 AM #4 (permalink)
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Welcome Paul. Sorry to see you here. My hope is that your second opinion points you away from MND of any sort. I am assuming your neuro has referred you to an ALS center for that second opinion? Particularly as PLS is even harder to diagnose than ALS. Sounds like you are on the right track and are in good hands.

You're right about everyone having different issues- but some of the typical symptoms are pretty generally shared. It's hard to give advice, unless you specify issues, such as the labilty- which gorby is spot on about with regards to the most common solution being Neudexta.

You mention stairs being an issue, and balance. Have you been seen by an occupational therapist? They can assess ability and need and possibly anticipate future needs as well. I'd write a list of the things you struggle with daily- eating, dressing, bathing, etc so you can work your way down it with an OT to see what they might suggest.

Once again, welcome to the forum- but sorry you find yourself here.
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Old 06-12-2018, 05:01 AM #5 (permalink)
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Hi Paul, it's nice to meet you, and I'm a newbie too!

It's crazy reading your symptoms, I see you, Brother! It's a strange feeling reading about someone else experiencing what I am experiencing. I don't know about you, but for me, it sometimes feels really lonely.

One symptom I don't have that you do is the emotional piece that isn't consistent with your feelings. I've read that some people experience that, but I haven't, that must be really disconcerting. I also haven't had the problem with drinking. Everything else is spot-on.

I was interested in what you said about startling. I've not read that as a symptom anywhere. I also do. I always have startled easier, but it's worse now. Each of my employees have developed different tactics to not startle me when they approach my door, one starts quietly humming, one waves her hand slowly in the doorway, etc. We all get a laugh out of it, and I say "I'm just that way, don't worry about it", which is true, but I don't tell them that it's a lot worse now. Now I am curious about whether there's a correlation.

Anyways, as shiftkicker aptly stated, sorry to see you here, and that SUCKS about the drums. At the same time, I'm a selfish creature, so also look forward to sharing experiences and tips as we travel this shitty road together and hopefully get a laugh or two out of it sometimes!
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Old 06-12-2018, 09:31 AM #6 (permalink)
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Hi, PLS newbies! Sorry to welcome you, but I welcome you nevertheless to the forum and its fun off-topic side branches like the pub. It can be a bit lonely in the PLS section I believe and life isn't all about being sick. So I hope you find good information and support here and post often and whatever you want.
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Old 06-13-2018, 01:28 AM #7 (permalink)
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That's right, life is what we make it and I chose to be positive and enjoy what I have. Having my second opinion with the head of the Neurology Department at Vanderbilt in Nashville Tn. in the morning, I'll give an update as soon as I find out something.
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Old 06-15-2018, 08:33 PM #8 (permalink)
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Originally Posted by PaulDaddy View Post
That's right, life is what we make it and I chose to be positive and enjoy what I have. Having my second opinion with the head of the Neurology Department at Vanderbilt in Nashville Tn. in the morning, I'll give an update as soon as I find out something.
Well he reviewed my previous EMG, Blood work, MRI and did tests on me in the office. He also confirms PLS. I go back in Sept. and in Jan. they will do another EMG. It is progressing slow, so that is good. I'm moving forward will try to make necessary plans for whats ahead. If anyone has any advice I would like to hear it.
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Old 06-15-2018, 08:42 PM #9 (permalink)
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Hi Paul, sorry about the confirmation. Glad to hear it's progressing slowly.

With regards to advice? That's a tough one- it really depends on your abilities and what your plans are. Were you able to ask at the clinic about speaking with an Occupational therapist? They have loads of practical advice for activities of daily living. Perhaps in the time before you go back in September, you keep a running list of things you would like to know about- mobility aids, fatigue mitigation, home remodeling, etc, and work your way through it with the clinic OT/PTs.
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