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Leg Weakness and Mobility Issues

Autoimmune Diseases | Last Active: Jul 7 3:40pm | Replies (58)

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@ukjanet

Hi again. Thanks for coming back to me. I’m sorry to learn how much this
is affecting your social life. You’re far too young to have to deal with
this. I only drive short distances and this is because I sometimes have
such strange sensations in my legs I feel as if they could cramp at any
time and I’ll go in the back of somebody. As soon as I get into the
drivers seat I start to get anxious. I’m sure that this makes things a
whole lot worse. Do you find that you have more energy in the mornings. I
do. I start each day full of optimism but by early evening my legs start a
dull ache. It usually passes before I go to bed and I sleep well. Two
years ago it was found I had protein in my blood and I was diagnosed with
MGUS. (It’s a pre cancer of the bone marrow) I now have to have my bloods
done every few months. There is a chance that my symptoms could be due to
that (CIDP) although the neurologist says he’s absolutely sure it’s not.
Like you I miss my old self and spend ages looking at photos of when I was
‘normal’. It’s impossible to explain to people what the pain feels like
but it’s just as if I’m ploughing through mud. I get so exhausted that I’m
scared I won’t pick my feet up and I’ll end up falling over. That hasn’t
happened yet. Where are you in the States? I’m in Los Angeles right now
staying with family. I have another appointment with my neurologist in
August but I don’t expect any answers. Do you think it could be MS or
Myositis? They seem to tick all the boxes. Lots of people have had muscle
aches after the Covid vaccine so that’s another possibility. I’m going to
keep on walking and also exercising on the static bike to keep up muscle
tone. Keep up with your PT. I see a Chiropractor every week. I do
exercises for spinal stenosis. It can’t do any harm! Please write back.
We can help each other through this and we have to keep positive. A few of
the people who have replied did make a complete recovery. Take care xx

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Replies to "Hi again. Thanks for coming back to me. I’m sorry to learn how much this is..."

Hi! That's great you're still trying to drive a bit, I understand the anxiety that comes with it. I haven't attempted driving since January when this weakness for me began because I'm anxious I'll get in an accident due to how quickly my legs give out strength/endurance wise. I miss it and want to try, but if I can't do it I'll be really discouraged since it used to be so easy for me.
I am very stiff first thing in the morning, but I suppose my leg energy is at its peak then the more I use them throughout the day they get more tired and I need to not overuse them.
I am also in California! In Orange County, so not too far from LA. My rheum said myositis isn't likely since my bloodwork for inflammation, creatine kinease protein, etc is totally normal. And EMG/nerve conduction was normal. I have no lesions on lumbar/brain, so MS was ruled out too. I just scheduled a cervical/thoracic MRI next month just to check no lesions there either. My rheum recommended I find a neuromuscular doctor, but those she knows are booked until fall which is so far away.
Yes, I am going to keep up with PT because I have slowly been able to do more reps/more exercises since I started back in February, so it must be doing something. I may try to slowly increase my steps each day too to see if that does anything for my endurance, which is the thing I want to get back to normal the most. I hope you find some help through your Chiro and static bike! I have considered Chiro but am nervous it'll tweak something weird. I tried acupuncture/cupping three times the other month but it sort of made things worse so I stopped.