I had asked this question in the middle of another post so I wanted to be sure it was seen. Those of you diangosed with MS. Do you get muscle weakness? It's really starting to affect me. The muscles in my arms and legs get really weak, especially on my left side. It's hard to hold my hair dryer and fix my hair, getting harder to walk up steps, sometiems just across the room, etc. Some days are much better than others. I was just wondering if this is an experience you all share as well.
I'm not sure I have "muscle weakness." The muscles seem to be as toned as ever, but my brain fails to get the signal to my muscles. My right grip strength and right foot extension strength are decreased.
MS doesn't directly effect the muscle, neuro-muscular junction, or the peripheral nerves. It is back to that same old thing -- MS is a disease of the central nervous system. My EMG is pretty much normal except for carpel tunnel (median nerve entrapment.) The problem is that the signal from my brain is not what the muscle expects. Low signal equals less muscle contraction.
I have been spending more time at the gym on the recumbent bike, and scrunching up newspaper in my right hand. I hope that repetitive task training may "retrain" my brain to send the appropriate level of signal to my muscles. At least this is the "best bet" therapy that a physical therapist could suggest. The PT says that if I can't work the muscles, the next step will be external muscle stimulation to keep the muscles toned and in good shape.
I seem to have a lot of muscle issues, apart from the spasms etc. I also have perceived muscle weakness, now i say perceived because technically my muscles are defined, toned and have normal to above normal strength for my size. Now in my mid 40's my body is still lean and athletic looking, like its always been BUT the signals my brain sends to my muscles are erratic, so a signal to the muscle could one minute be constantly firing and the muscle will spasm or the opposite of that and not get any signal at all so the muscle is not aware its needed and doesn't respond as you expect it too.
I'm still able to wake-board when they are cooperating, the muscle memory is there and kicks in to get me up (yahooo lol) but within a short space of time the energy stored in the muscles becomes depleted and i'm a dead fish in the water. No muscle is strong enough to even turn me over if I end up face down, so i stop before it goes that far.
One of the things i find interesting is that my body is calm whilst suspended against gravity, my life jacket is fully supporting me in the water, i'm exhausted but my body is totally calm and relaxed, an awesome feeling! Once i get out (which usually is being hauled in like a dead fish, finesse totally out the window lol) the muscles are then required to work against gravity and my brain sends out the signals that they need to be working and instead I just tremor like i've stuck my tongue in an electric socket.
I think my muscles lie to me, I can easily pick up the coffee can when they are playing fair but when they are not, that coffee can may as well be a 50kilo weight because thats exactly how heavy it seems to the muscles i'm trying to use to pick it up. lol Same item so same weight but the 'perception' is that its way heavier than it is, they must be lying!
Being athletic is part of who I am, still finding it hard to get my head around the reality, it defies my lifetime of understanding. You work a muscle and that muscle gets stronger and holds its stored energy for longer, right? well carp its no longer true! Work a muscle and instead of it getting stronger etc it bloody well gets weaker and weaker until its usless.
Like Bob i'm hanging my hat onto helping my brain rewire (brain plasticity) what ever it takes to keep the signals getting through, little baby repeditive steps to keep the muscle memory alive.
I can't possibly understand either of your exact situations, but I totally understand the frustration. When your body doesn't respond the way you want. I've been dropping things a lot lately and running into the walls, door frames, etc. It's becoming very frustrating and I feel so embarrased. Of course so many people have no clue what I'm going through, so they look at me like I'm ditsy! I am blonde, but I consider myself a fairly intelligent person. :) hee hee. I've never had an EMG. What is that? Does that determine muscle issues?
I have "weakness" issues in all 4 extremities. Basically, my muscles feel like they're constantly "on", and I get amazing spasms, mostly in my legs, that go anywhere from just a few seconds, to a hip adductor spasm that lasted for 45 minutes! The dreaded MS Hug (read-Anaconda) is a frequent companion as well.
I try to keep my strength together with Yoga and cycling (when balance isn't an issue). I can't climb hills like I used to, but a ride on the flats still makes me really happy! And exercise helps my mood tremendously, anyway.
FWIW, I had a normal lower extremity EMG that was normal, except when my L leg was stimulated, my R leg jumped!
I sure hope that your rhematologist addresses these. Your PCP should have done the basics long time ago. Did you ever track down the woman neurologist that you were told about?
You were told that your symptoms were caused by stress/depression?? Maybe, maybe not. Any doctor who slaps any label on a patient without crossing t's and dotting the i's, is as Quix would say a "dunderhead." That is to put it politely in the case of your neurologist and PCP
I know a woman who was recently diagnosed with Lyme disease. She had two completely unnecessary surgeries because of pain symptoms prior to diagnosis. Her doctors were not looking at the whole picture, but blamed the pain based upon their limited knowledge in their respective fields. I guess my point with that story is that perhaps you could benefit greatly by finding yourself a seasoned PCP with some initiative.
Finding yourself in competent hands makes all the difference. When I developed optic neuritis, an opthomologist wanted to test my peripheral vision with a lengthy and expensive test. They had just purchased a new machine. I was fortunate to find another opthomolgist who LISTENED to me. He gave me vision test after vision test. I was sooooo frustrated because my vision was NOT normal but only I could perceive it. He believed what I reported I was experiencing even though all his testing was normal.
Later I developed double vision, left sided weakness/numbness, dizzyness, pins and needles, hot & cold sensations, etc etc. Guess what? My physical exam was normal except for heightened reflexes. He believed me anyway.
A few doctors before these did roll their eyes around in their head when listening to my rather bizarre and sometimes fleeting symptoms. That's okay - as long as they get their rears in gear and get to work. This is how I got my work-up. My rheumy cleared the path of the mimics. In hindsight a good internist would have helped me a lot too. I found a good one later.
Good luck to you. You might have to kiss a few frogs.
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