One-sided weakness

JaimeS said:
I was told it was "probably a pinched nerve" with a wave of one hand.
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Ahh, the magic wave. :rolleyes:

BeautifulDay said:
Sometimes my leg will just go out while I'm walking (without any advance notice) and I'll fall to my butt.
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This happened to me a couple of times, several years apart. I have also tripped on stairs a couple of times. Fortunately, I was going up the stairs both times, so fell forward. I quickly learned to be very careful on stairs.
 
Jenny TipsforME said:
When I have weakness or paralysis it’s symmetrical. It can be localised, but it would be both legs or both arms.

Things people mentioned to me though included hemiplegic migraine. That doesn’t fit my experience but could it be relevant for you @JaimeS ?
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Probably not -- the other symptoms of hemiplegic migraine don't seem to match up. Thank you, though!
 
JaimeS said:
But the same pattern could be invoked by dopamine imbalance or receptor issues, so there's that.
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I don’t think this explains your one sided weakness but as an aside re dopamine, trawling through my whole genome I’m homozygous for a pathogenic mutation of this which seems like it’s worth pwme being aware of as it could perhaps be misdiagnosed as a EDS/POTS (or NMH)/ME combo:

Dopamine beta (β)-hydroxylase deficiency is a condition that affects the autonomic nervous system, which controls involuntary body processes such as the regulation of blood pressure and body temperature. Problems related to this disorder can first appear during infancy. Early signs and symptoms may include episodes of vomiting, dehydration, decreased blood pressure (hypotension), difficulty maintaining body temperature, and low blood sugar (hypoglycemia).

Individuals with dopamine β-hydroxylase deficiency typically experience a sharp drop in blood pressure upon standing (orthostatic hypotension), which can cause dizziness, blurred vision, or fainting. This sudden drop in blood pressure is usually more severe when getting out of bed in the morning, during hot weather, and as a person gets older. People with dopamine β-hydroxylase deficiency experience extreme fatigue during exercise (exercise intolerance) due to their problems maintaining a normal blood pressure.

Other features of dopamine β-hydroxylase deficiency include droopy eyelids (ptosis), nasal congestion, and an inability to stand for a prolonged period of time. Affected males may also experience retrograde ejaculation, a discharge of semen backwards into the bladder. Less common features include an unusually large range of joint movement (hypermobility) and muscle weakness.
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https://ghr.nlm.nih.gov/condition/dopamine-beta-hydroxylase-deficiency#
 
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From Wikipedia
A subset of DβH deficiency patients present with hypermobility.[1] Postural orthostatic tachycardia syndrome, another form of dysautonomia, also sees this comorbidity with hypermobility in the form of a rare connective tissue disorder called Ehlers Danlos syndrome.

Another commonly experienced symptom is hypoglycemia, which is thought to be caused by adrenomedullary failure. In looking at the cardiovascular system, a loss of noradrenergic control is seen as T-wave abnormalities on electrocardiogram. Prolactin is frequently suppressed by excessive dopamine found in the patient's central nervous system. Excess dopamine can also affect digestion, producing vomiting and inhibiting motor signaling to the GI tract.[3]
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Jenny TipsforME said:
I don’t think this explains your one sided weakness but as an aside re dopamine, trawling through my whole genome I’m homozygous for a pathogenic mutation of this which seems like it’s worth pwme being aware of as it could perhaps be misdiagnosed as a EDS/POTS (or NMH)/ME combo:

https://ghr.nlm.nih.gov/condition/dopamine-beta-hydroxylase-deficiency#
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A very clever endocrinologist tested me for this mutation straightaway, VERY early in my diagnostic path. I was seriously impressed.

[Edit: wait, that was 11-B-hydroxylase, not dopamine beta hydroxylase...

Huh. Maybe I should get tested for that....]
 
Inara said:
Please keep us updated.

Today again, right leg "weakness", with lots of concentration I could change from dragging it to limping for some moments, then back to dragging. Just walking simply wasn't doable. Really a sh*** feeling.
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That sounds more like MS to me than ME. Definitely not normal. And in my mind, not typical of ME
 
Thanks @Milo and @Little Bluestem, MS was ruled out. It only happens when I've overdone it, and it goes away with rest. I don't think that's MS'ish? Also, EMGs and ENGs were normal (besides "chronic neurogenic remodeling", but I don't think that's relevant). However, chance wills it that I'll have a "muscle and nerve MRI" in 2 weeks, that should clarify it.
The same leg was temporarily paralyzed, most likely due to oxygen stuff because it resolved with better oxygen availability (and doesn't occurr with oxygen inhalation in the first place). That's also not like MS, I'd say.

My impression was others experience such "temporary weaknesses" due to exhaustion (or whatever), too? It could also be a neuropathy thing?
 
Inara said:
Thanks @Milo and @Little Bluestem, MS was ruled out. It only happens when I've overdone it, and it goes away with rest. I don't think that's MS'ish? Also, EMGs and ENGs were normal (besides "chronic neurogenic remodeling", but I don't think that's relevant). However, chance wills it that I'll have a "muscle and nerve MRI" in 2 weeks, that should clarify it.
The same leg was temporarily paralyzed, most likely due to oxygen stuff because it resolved with better oxygen availability (and doesn't occurr with oxygen inhalation in the first place). That's also not like MS, I'd say.

My impression was others experience such "temporary weaknesses" due to exhaustion (or whatever), too? It could also be a neuropathy thing?
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I am no expert @Inara but i hope you get this investigated further and that you get answers. Best wishes!
 
I get right sided weakness with a numb achey pain (feels a lot like a local anaesthetic (eg dental) as it wears off) I began a few months after ME onset in my face and scalp. I also experience it in my arm and leg, which can affect my gait if I'm walking too much. My foot has a tendency turn in and drag.

This comes on for a variable period, and goes away again for a variable period, which can be for a couple of years.

I mention it because it sounds a bit similar to what others have described in this thread, but I don't know if it's the same thing. About 6 or 7 years ago when it was particularly bad, I saw my GP about it. He wanted to rule out MS and refered to a neurologist. MRI and nerve conductivity testing were normal, so no sign of MS or other neuro-degenerative disease. I was told it could perhaps be the 'CFS' (which is my diagnosis) and that was that.

I don't know what's happening, but
@Inara I also think you should get it checked out.
 
Jenny TipsforME said:
I don’t think this explains your one sided weakness but as an aside re dopamine, trawling through my whole genome I’m homozygous for a pathogenic mutation of this which seems like it’s worth pwme being aware of as it could perhaps be misdiagnosed as a EDS/POTS (or NMH)/ME combo:

https://ghr.nlm.nih.gov/condition/dopamine-beta-hydroxylase-deficiency#
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https://www.ncbi.nlm.nih.gov/books/NBK1474/#dbh.Differential_Diagnosis

This is a really good resource on that -- I've linked to the differential diagnosis section because we're looking at things that might be confused for DBH deficiency. Interesting read.
 
Whelp, I fell. Don't read the rest of this if you're squeamish (I'm ok).

Tripped and put my hand out to break my fall -- nail actually bent back on itself. Had to bite the bullet and snap it back into place. Yeowch! Typing mostly with the left hand and pointer finger of the right. Seems I messed up the whole hand a little -- right wrist keeps cracking. I'll get a better idea of how bad it all is tomorrow but nothing is broken.

Direct consequences of clinical dismissal. I am very steady on my feet: the last time I had an uncontrolled fall was in undergrad on ice. Yep you read that right: nearly 20 years ago. Very irritated and in some pain.
 
JaimeS said:
Whelp, I fell. Don't read the rest of this if you're squeamish (I'm ok).

Tripped and put my hand out to break my fall -- nail actually bent back on itself. Had to bite the bullet and snap it back into place. Yeowch! Typing mostly with the left hand and pointer finger of the right. Seems I messed up the whole hand a little -- right wrist keeps cracking. I'll get a better idea of how bad it all is tomorrow but nothing is broken.

Direct consequences of clinical dismissal. I am very steady on my feet: the last time I had an uncontrolled fall was in undergrad on ice. Yep you read that right: nearly 20 years ago. Very irritated and in some pain.
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So very sorry @JaimeS. Are you ok otherwise? Did you hurt your head? :( Go get an x-ray if it keeps on hurting. You never know. Lots of bones in the hand.
 
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