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Bulldog29

Active member
Joined
Nov 6, 2015
Messages
38
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
US
State
TX
City
Mansfield
Haven't been on here in a while (took some advice from some other members and just enjoyed the holidays) but I wanted to give an update on my situation and my original thread is closed now. Anyway, was seen this week by Dr. Elliott (Bill's doctor) at UTSW Neuromuscular dept. He wasn't as ready to give me a diagnosis as my first neuro but said he did see a lot of signs consistent with PLS. He ordered some new blood work and I have an EMG scheduled in a couple of weeks. One of the things he told us was that the EMG is used to look for ALS and a clean EMG would mean that only Upper Motor Neurons were involved, at least that's the way I understood him.

He walked me through a lot of the same tests as before in the exam room, checking strength in my arms, legs, feet, etc. One thing I hadn't been tested on before was how fast I could move my tongue from side to side and top to bottom. I didn't do so well on those and I guess I never realized it was an issue but he was concerned about it either way.

He also told me that the Baclofen I was originally prescribed needed be taken daily and at a much higher dose to have any chance of being affective, something I didn't know. I thought it was for occasional use.

I walked out with a lot more questions than answers but at least now I feel I have found the right help.
 
BD, glad to hear you are now in the right place. You heard him correctly -- the EMG shows lower motor neuron damage, so if there isn't any (making the case for PLS), then the EMG will be normal. It's also true that to improve spasticity, drugs like baclofen have to be in your bloodstream at a constant level.

Ping here if more questions come up as you move forward in the diagnostic process.

Best,
Laurie
 
hi Bulldog,
Nothing worse than not getting the answers you were expecting. I had a meltdown last clinic for the very same reasons. I surprised myself at how much was depending on getting answers, any answer, from the neurologist. i empathise. i hope your upcoming EMG clarifies things

best wishes
 
Bulldog, I am glad (and sort of surprised) you got to see Dr. Elliot. He is the Dept Chair and heads the ALS research at UTSW. He is a little cautious at handing out a PLS diagnosis since it so rare but if you get one you can feel confident in it. Since it is a teaching hospital your EMG will probably be done by an intern and supervised by a doctor (not Elliot). I've had 3 there. They usually do one every 5 years.

If you do get a PLS diagnosis all your visits will probably be on ALS Mondays and you will become an MDA patient. I may see you there.
 
Bulldog, I am glad (and sort of surprised) you got to see Dr. Elliot. He is the Dept Chair and heads the ALS research at UTSW. He is a little cautious at handing out a PLS diagnosis since it so rare but if you get one you can feel confident in it. Since it is a teaching hospital your EMG will probably be done by an intern and supervised by a doctor (not Elliot). I've had 3 there. They usually do one every 5 years.

If you do get a PLS diagnosis all your visits will probably be on ALS Mondays and you will become an MDA patient. I may see you there.

Bill, I'm glad I got to see him then. He told me that if I wanted to work with his schedule that he would perform the EMG so that I could ask more in-depth questions during the test and get answers from him directly on the results. I guess I was lucky to get scheduled at the end of the month with him to perform the test.

I really appreciated his bedside manner; he didn't jump to any conclusions just to prove how smart he is. I guess, in the back of my head, I was hoping that he would tell me that I was suffering from some benign nerve damage or something, not PLS/ALS so I was kind of crushed when he went down the same path as the previous doctors.

You mentioned MDA in one of your other posts. What does that mean?
 
If your an MDA patient there are several benefits like being able to borrow equipment from the MDA loaner closet. Also, they cover some costs not covered by insurance. They also paid for batteries for the loaners etc.
 
Ahh, ok, I was thinking MD Anderson, the cancer research center.

Shift-I know what you mean, I keep holding out some hope that the doctors are wrong so when they all say the same things I get depressed after every visit.

I have one quick question for the group. Dr Elliot seemed concerned when I told him that along with spasticity and the lack of coordination on my left side that I'm having small muscle twitches on both sides. I poked around last night on the internet and found lots of mentions of twitches with ALS but mixed info about that particular symptom with PLS. Do any of you with a confirmed PLS diagnosis have muscle twitches? Mine are small and I really haven't paid much attention to them until he said something Tuesday. Now I'm noticing them all of the time, especially in both triceps and left hand.
 
Bulldog- Twitching- the symptom that send DIHAL'ers into orbit...
Yes. I get twitching. All the time. Only in specific muscle groups, and I've learned it is a sign that this is where spasticity is going to slowly grow next. I've seen it mentioned amongst those who only have UMN symptoms on different forums.

My doctor explained to me that it does happen with PLS (and MS, and HSP, and many other diseases)- For those of us with UMN issues only, it's due to muscle irritation and is of note ONLY if there are LMN signs such as those detected by emg. However, the doctor did say "observable" by exam is more of concern to them as well. You may have noticed while they conduct an emg they might poke you a little harder, or wiggle the needle going in- that can elicit observable twitching. My doctor even just straight out flicked my arm last time I saw her. So, it CAN be of concern, but, you have to wait till something shows up on emg before it actually means something. It definitely means your doctor will be monitoring it, along with your other symptoms for the next few years before giving a firm PLS diagnosis.
 
Bulldog, I've had small twitches almost from the beginning and they have never gone away. I have them all over but they are most noticeable on my calf muscles. I would guess I have about 1 a second in my calfs. I really don't notice them during the day unless I look at them. When I sleep at night I can feel them. I asked Dr. Elliot about them he seemed unconcerned.
 
Don't mean to cause a stir here but... there are many opinions concerning fasciculations (twitches). In true PLS from the bottom of your feet all the way up to the Primary Motor Cortex of the brain there is no defective mechanism to cause them unlike that of ALS. During continuous PLS spasticity, intermittent cramping and Charlie Horses fasciculation would be near impossible to present itself. Baclofen (and other meds) are effective for PLS spasticity. Fasciculation for those with ALS.

Possibly for those with spinal cord injuries/surgery also diagnosed with PLS which could be debated of which one is really which.
 
Al-I've read some published medical articles that state the same as you replied above; that's why I was curious. In my case, the "twitches" are rarely in my left leg which is the most affected limb. They tend to be in muscles in my shoulders and upper arm.
 
I've read the same things. I've also spoken to my neurologist at the ALS clinic and with others who have strictly upper motor issues because I was worried about what they might mean. I would rather believe those who deal with the disease either as a sufferer who have them, or an experienced medical professional, than a very few studies on PLS published on the intertubes. Not because I'm fooling myself, but because I live with some hope. Al, no stir caused, but don't discount others' experiences.

Bulldog, if you search the PLS forum, you will see mention of twitches from others with PLS as well. It's not always a sign of doom or an addition of another issue, such as spinal injury.
 
I don't doubt that some with PLS may have fasciculation (twitches)... the good news is that twitches are not related to or caused by PLS.

After receiving an Email I need to add that spinal cord injuries/surgeries do not cause PLS or ALS. There is no accredited link... not even close. There are nearly 300,000 spinal cord injuries/surgeries (in the areas of Cervical/Thorax/Lumbar) a year. Always giving coincidence a chance... suffering from both is a possibility taking rare to another level.

But... there is a growing possibility of an accredited link between brain injuries and MNDs.
 
Shift-Dr. Elliott did tell me that my twitches may be indicative of something other than PLS or of nothing at all. He advised me to journal them along with watching my caffeine intake for discussion after my EMG.
 
Watch caffeine intake??
Bugger that!

My addiction to Mocha is putting the mocha factory workers kids through university!!
 

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