Troubling Thoughts

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Joined
Feb 11, 2016
Messages
24
Reason
DX UMND/PLS
Diagnosis
03/2016
Country
UK
State
UK
City
England
Hi Everyone.I am waiting to be seen hopefully in the not too distant future at our big Neuro centre in London (horrendous waiting list), as apparently I am a mystery:cry:.
In the meantime, I am now noticing that both my legs are from knee down are changing shape. The shins have flattened out and both legs look like they have "lost weight". The inner part of my knees have also "hollowed" out.
I have not lost any weight, this remains steady. I have noticed this over the last month. I have had a nasty fall last week, but generally can still walk, with the spasticity.
Also I am getting lots of flickering of muscles all over, esp the thigh area, and pain,but I am have had this in bouts before.
My EMG in April was clean. Is it possible in such a short period of time that this could be me progressing to LMN issues?
In less than four months? Seems unlikely.
Or could it just be my legs changing shape because of over a year of abnormal walking and spasticity?
Would Bacoflen be the answer to stop some of these changes in my legs? Has anyone else seen such changes in their limbs with UMN & Spasticity? I would really appreciate your thoughts on the matter. Thank you!
 
If it were als, anything is possible. There is no set progression. Please wait for your neuro appointment for answers. Otherwise, to engage in speculation is simply exhausting
 
Having seen posts in other places with regards to musculature and twitching within the UMN afflicted, it's perfectly "normal" and in no way indicative of LMN signs. With imbalanced muscle spasticity, some muscles just don't get used, while others over develop- which causes leg shape changes and muscle definition reduction/increase. My shins are blade sharp now due to my gait change- I was always very muscular up front, now not so much.

Muscle twitching is also common- not the diagnostic faciculations of ALS, per se, but overworked and stressed muscles unable to function properly. Ask anyone with PLS or HSP and you will find most have had twitches. Overworked muscles do twitch- look on any weightlifting/exercise forum even- and by golly, spasticity is the ultimate in overworking muscles.

While Baclofen can help with spasticity, I never had a reduction in the twitching when I took it. Tizanidine doesn't help either. But, everyone responds to medicine differently, so it might help you?

Facebook has a couple of decent groups where there is a large number of active Brits with PLS and HSP. If you search for Primary Lateral Sclerosis, you will find a good one run by a woman from the UK and a group of people who actively post on a daily basis. One of the recent conversations there was about leg muscle changes exactly like yours.

Best of luck at the neuro centre when you go.

Fiona
 
Fiona I can't tell you how helpful that reply was! Thank you so much... I often hear emg shows changes before one knows oneself, so it just does not make sense that these changes should be so soon after. I will let you know what they say at the National hosp once I am seen. These forums are so helpful as one goes through this journey. A route no one wishes to be on.
 
I don't post much because my hands are slow but I wanted to respond to your post. I have similar changes as you in my leg muscles, and, like Fiona, have sharp shinbones now. I doubt most people would say my legs look 'wasted' (or any other part of my body) but I notice the subtle changes in my musculature. I have had symptoms for at least four years now and have had at lest 3 'clean' EMG's. My legs still retain a good deal of strength as I am able to pedal my recumbent trike up our fairly steep gravel road and kick hard in the pool, but my walking and balance are terrible so I use a rolling walker in the house and a transport chair for longer distances. Also, I am participating in the NIH PLS study called 'The Natural Progression of PLS' and I wouldn't have gotten into it if I didn't meet criteria for PLS.

Baclofen did not work for me. It made me super tired and foggy and caused serious sleep apnea at night when I got to 30 mgs., though I may look into the pump sometime down the road. Interestingly, Dr. Floeter, the NIH PLS expert, said that Baclofen was better for spasms than spasticity, though of course they are interrelated symptoms in MN disorders. I do not take any prescription medication at this point but I do vaporize an indica strain of natural cannabis at night, with the blessings of my neurologists. It helps me sleep and relaxes my muscles for at least part of the night. I also had a lot of twitching muscles during the first couple of years or so but not as much anymore. I believe the cannabis helped that problem by calming down my nervous system, though it took some time.

Things that helped me: Not dwelling too much in the future or what I can no longer do--we all find ways to adapt and accept but it takes time. Also, sleeping and napping when tired or stressed, stretching, massage (although I can no longer easily do this because I can't flip over on the table), swimming laps and pool exercise. Having good support helps too--I'd be in trouble if I didn't have my husband around to take up the slack and help me with countless, endless tasks.

I hope your appointment goes well and you get some satisfactory answers. Kathy
 
Kathy thanks so much for reply. Especially as it is hard for you to type. I was so touched. Gems of info there which I shall ponder upon, thoughts no longer troubled as much! What a great thing to be participating in with the study you mentioned,to help others at the same time. I will certainly be up for anything that can help others for the future.
 
Hope vs Hope. As I've written before... with Primary Lateral Sclerosis from the Primary Motor Cortex (the center of your brain) down to the bottom of your feet there is no defective mechanism to cause fasciculations (twitches) unlike that of ALS. Not saying people with PLS don't have them but... the cause is not MND related. So... don't worry about the "twitches." I have a confirmed diagnosis of Primary Lateral Sclerosis ( Veteran Benefits and all) and I do not have fasciculations. I am fortunate that I do not have any side effects from Baclofen at 30MGs three times a day. I am becoming a candidate for the pump. I agree with one of the replies above that Baclofen does more for Charlie Horses (muscles) and cramps (tendons) than help spasticity. Spasticity is PLS. Hope your Neuro visit gets you on the right path to stabilize your condition and restore more quality of life.
 
After a second reading... why is this Thread on the PLS sub-Forum?

A better fit might be the General Discussion About ALS/MND or a HSP Forum.
 
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