One-sided weakness

OK brain trust!

My own thread about how pwME ignore symptoms that may be something else has shamed me.

https://twitter.com/user/status/1084501087137067008


Apologizing in advance for the long description of the symptom/history, but it's complex. Using boldface to try and make it easier to read!

About a year ago working at Stanford, my left leg began to go out from under me entirely.

This used to be a symptom of pure exhaustion, when I'd overdone it... but it was usually a sign of SEVERE crash at that time. I was far, far more likely to simply have trouble moving in the first place.

At Stanford I did lab work, sometimes for hours at a time without rest, and I think that there is a certain focus in staying upright under those conditions. Once I let that focus relax, my left side would just sort of... give out.

And even though I'm upright less often now, working from home about 75% of the time, and when I am upright, it's for a shorter period of time. And it's still happening.

If anything, it's getting a wee bit worse.

No serious falls. Once or twice I've been in the middle of a hallway without anything to grab and gone down rather sharply on my hands and/or knees, that's about it. It's not like my leg is 'turning off' like a light switch; I can usually catch myself which, I think, means that it's a sudden weakness not a sudden paralysis.

It can worsen in correlation with other symptoms but honestly it can happen even if I'm doing pretty darned well, otherwise.

Did actually brave a convo with the doctor where I raised a concern that it might be dopamine-related. I know I have a dopamine receptor mutation that incurs some loss of function in DRD2, and both my mom and sister (who also have ME) have documented dopamine-related issues (restless leg, e.g.). I was told it was "probably a pinched nerve" with a wave of one hand.

Not only are there dozens of potential reasons for one-sided weakness, but even on medical websites "chronic fatigue" is listed as one of them. Could it be that I've simply exhausted my resources and the largest weak muscle(s) is/are giving out?

Open to speculation about what's causing this or what might be useful for further testing.

 

Am afraid I cannot help troubleshoot causes.

But something similar happens to me if I walk too much.

I sometimes begin to drag one of my legs. If I'm stubborn and keep walking, they both begin to drag.

I get other random gait changes if I walk to much (looks like I am trying to walk like a robot?? or at other times doing a weird-cross-in-front version of the grapevine while walking forward??). A neurologist has seen the robot one (not the foot dragging) and although it was the most worst neurologist I ever saw, I expect they would have said something if it was characteristic of some well-known condition.

I tend to guess ion channel things as causes but am just making guesses. I have no evidence.

 

My first thought is that any one sided weakness should be refered immediately to a doctor as one of the potential causes is a stroke which is most effectively treated medically in the first couple of hours after onset.

Having said that I did not follow my own advice when two years ago I experienced a weakness in my left arm, accompanied by failing to recognise my left hand/arm as belonging to me (each time it entered my visual field I jumped, because there was no one else in the house, then worked out it was my hand, then minutes later the same was repeated). I also had a severe head ache, but that for me is a common occurance.

I tried phoning my neighbours but no one was home. Trying to use the phone was the limit of what I could do and had to lie down, without having decided to call an ambulance or not. Fell asleep straight away for some twelve hours or longer. When awake my symptoms had gone.

The following morning, my neighbour phoned my GP who spoke to me that afternoon and visited the next day. My GP wanted to refer me to the TIA clinic as an outpatient, but I felt by this stage the benefits of a firm diagnosis not worth the cost to my ME of traveling the 30 miles to hospital and the ordeal of waiting rooms, etc. We agreed if a similar event happened again I would call an ambulance and that I would take daily aspirin in case it was a TIA.

The most probable cause was a TIA, which means I am at higher risk of more TIAs or a CVA, though it is not certain given the delay that a scan would reveal any cause and probably the most appropriate treatment would be daily aspirin (and diet and lifestyle changes which are restricted by my ME). The other options seem to be it was an atypical migraine or caused by my ME.

CVAs are best dealt with by immediate hospitalisation, but I must admit that given the severity of my ME at that time, I was struggling to balance the costs to my ME of going to hospital over the potential benefits. I fell deeply asleep before I was able balance this in my own mind or to get someone to be there in case I deteriorated such that I could not call an ambulance.

[Added - a one sided weakness that comes and goes, could have a number of causes, but it can not be ruled out that it was not caused by a very mild stroke that caused neurological damage with the reoccurring/ongoing symptoms only becoming obvious when tired or the system is in stress. Though if this is the case one might expect the initial event to have had more marked symptoms than subsequent reoccurances of the symptoms. I would suggest any one sided weakness should be immediately assessed by a doctor. ]

 

The stroke possibility should be checked.
That said my first thought was cataplexy which is a symptom of narcolepsy. Its unlikely you have narcolepsy but that is what came to mind.

Back when i was still working and killing myself i had lots of weird manifestations from what i called exhaustion attacks (short term burnouts that often looked like seizures), shakes, motor control issues and so forth. It could be a symptom of overdoing it but i don't think there is any way to test this short of giving up what your doing

 

@JaimeS

Is you balance OK? How about dizziness?

I can't suggest anything else, but like @WillowJ, I also had foot drag or drop which I think can be a symptom/sign of MS. For a time my left leg would partially give out - I thought it was my knee - no real pain, just weakness. Haven't had that symptom in a while - but symptoms do come around again.

Re your medical consultation about this: can't stand that dismissive hand wave thing people do.

For both you, and @Peter Trewhitt, would it be an idea to get brain imaging at some point re potential strokes?

@Peter Trewhitt, your comments here are another example of putting off medical consultation for potential serious health concerns. I really do understand - just as @JaimeS quoted above, I can't have one more thing! And, we're just too exhausted and PTSD'd to happily go through the medical mess for one more thing!

 

As I have written elsewhere I recently lost partial feeling of my entire left side, like if someone had drawn a line down the middle of my face and body and then treated the left half with a mild topical anesthetic. Not the same as your feeling of weakening @JaimeS , but the one sided part sounds similar.

Doctors took that stuff VERY seriously and even had me hospitalized until they could make sure it wasn’t a stroke (even if I had waited two days before seeing a doctor about it). In the end of course it turned out to be nothing, but the way it was handled made me pretty sure I was right to have it checked out

 

Hi @JaimeS the title of this thread is one sided weakness, but you mostly mention it happens when you stand therefore it is more like leg weakness. I wonder whether you can ascertain it is in your arm on the same side too.

In that case then it likely originates from brain and it would make sense that you get a good neuro exam, and possibly a brain MRI as well to start ruling out the major pathologies?

This is clearly not normal and deserves to be investigated.

 

Thanks for all the replies, everyone.

To be clear, if I have very bad neuroinflammation, I do get tingling and numbness on my face and feet, and have a lot of the other issues mentioned here. I do say one-sided weakness because grip strength on left hand isn't so great either.

Of course it's serious, but...

Ever think Le Belle Indifference is really just the crushing resignation of having a chronic illness? Everything is serious and your doctor dismisses it all. It can be so bewildering that the only reaction left is "whelp, whaddaya gonna do?" *shrug*

 

So, channelopathies can be weird like that, and they can manifest as profound weakness in certain parts of the body (while other parts of the body remain seemingly ok). I am certainly not trying to diagnose, but if there were a good battery of channelopathy tests, I might be inclined to look that way. Calcium and sodium and potassium ion channels that in great part define muscle ability or its limitations - more and more abnormalities are being revealed, and sometimes with associated genetic markers that can help identify and name them.

Of course, I know you know there isn't really good testing for those yet.

They fall under the neurology umbrella, but there are not many neurologists that know much about channelopathies other than they exist.

 

This is heartbreaking, that outside the very few ME experts around the world, there is this sense of unease that no one would care enough to investigate a serious symptom.

 

I have been leaning towards channelopathies as well.

 

But would channelopathies only affect one side of the body? Is there an example of this in medicine?

 

Facial palsy?

Evidently some channelopathies can impact a limb, or half a body or a specific area of the body - it does not need to be global, although it certainly is for some. I do not know why it works that way, but it seems it can. My wife's episodes can be isolated that way.

Lots of what is known of channelopathies is counter-intuitive. For instance, many episodes of muscle weakness or paralysis do not follow exertion; rather they follow prolonged periods of rest, like sleep.

 

Yes and that's why I've suspected this for myself in the past... I've always found it a lot tougher to initiate movement than to keep going once I've started, especially after prolonged rest. When minor, I kept moving because to stand still or be too still felt awful. Sometimes I wonder if that isn't how GET started; it can't all be antipathy and abuse.

But the same pattern could be invoked by dopamine imbalance or receptor issues, so there's that.

Or hey, why not smish them together and get autoantibodies to dopamine receptors? That's a literal thing found in some pwME. Apparently.

https://www.ncbi.nlm.nih.gov/pubmed/24068616

 

Link leads to a login page

 

I know what you mean, i had to push myself to start but once i was going it was easier.
Also at some level of PEM threshold i would get a second wind, the more i used it the worse the PEM but it was there and i had to use it to survive many times

I would get checked for the common stuff though, its human nature to hear hoofs and think horses but we are just as susceptible to standard diseases as everyone else

 

Sorry, it's very frustrating, I still have Stanford logins and it keeps reverting to them... even when the article is free! I will find another link and edit the original post.

[Edit: done. Now links to pubmed.]

 

@JaimeS

I'm so sorry you are going through this.

I have the weakness most heavily in my right foot and leg. Sometimes my leg will just go out while I'm walking (without any advance notice) and I'll fall to my butt. I sit on the ground until it comes back on line. The weakness isn't there all the time. I was in my early 30's when it first started. More often than not, it doesn't completely go out. For example, if there are 100 strings operating my leg (think of a puppet), then all of sudden it feels like 25 strings have been cut and my leg doesn't operate normally for the time being. Sometimes I wake-up with it like that and it will last all day or for a few weeks. Occasionally, it happens to my left leg instead.

I've been through all kinds of tests as doctors tried to figure it out. I've been seen at Mayo, Columbia, Johns Hopkins, Penn, etc... over the years. Pretty much no answer from them on this symptom.

My Mitochondrial doctors believe it's just another symptom of the mito. At last an answer. But not one with any treatment. And of course, I also have the diagnosis of Chronic Fatigue Syndrome. Thankfully there are also days, weeks, and months without the weakness.

My worst fall was carrying out the bag of recycling glass and cans. My foot went out on the stairs. I fell a few steps onto the glass and had 15 stitches in my thumb. Then later another surgery with two nerve grafts. I am especially careful on the steps now.

Our youngest daughter (9 years old) has this same weakness and neuropathy. She started having foot drop after a severe virus at the same time the Polio like virus was infecting kids in our state. Friends would come up and ask if we noticed our daughter was limping often in preschool and kindergarten. By then we had seen specialists who couldn't figure it out. But now we just attribute it to the mito like her mito doctors do.

These days she'll wake up and sometimes tell me "My foot is not working right again mommy". I wish there was more I could do. We do stretches and try to get it going again. Sometimes it's fully back online by school. Other days it's not.

From my book:

"Post Polio fatigue is very similar to ME/CFS and some individuals have been diagnosed with both polio and ME/CFS. In this study titled “The Major Apoptotic Pathway Activated and Suppressed by Poliovirus” (90), they link the infection with the polio virus to mitochondria. “Cells respond to poliovirus infection by switching on the apoptotic program, implementation of which is usually suppressed by viral antiapoptotic functions. We show here that poliovirus infection of HeLa cells or derivatives of MCF-7 cells was accompanied by the efflux of cytochrome c from mitochondria. ….. Both caspase-9 and caspase-3 were shown to be essential for the development of such hallmarks of virus-induced apoptosis as chromatin condensation, DNA degradation, and nuclear fragmentation. These and some other results suggest the following scenario. Poliovirus infection activates the apoptotic pathway, involving mitochondrial damage, cytochrome c efflux, and consecutive activation of caspase-9 and caspase-3.”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC140567/

...
...

"This study’s title has the potential answer -- “Preliminary evidence of mitochondrial dysfunction associated with post-infective fatigue after acute infection with Epstein Barr virus” (84). The study reports that:
“Acute infectious diseases are typically accompanied by non-specific symptoms including fever, malaise, irritability and somnolence that usually resolve on recovery. However, in some individuals these symptoms persist in what is commonly termed post-infective fatigue. The objective of this pilot study was to determine the gene expression correlates of post-infective fatigue following acute Epstein Barr virus (EBV) infection.
….
Results: Those who developed post-infective fatigue had gene expression profiles indicative of an altered host response during acute mononucleosis compared to those who recovered uneventfully. Several genes including ISG20 (interferon stimulated gene), DNAJB2 (DnaJ [Hsp40] homolog and CD99), CDK8 (cyclin-dependent kinase 8), E2F2 (E2F transcription factor 2), CDK8 (cyclin-dependent kinase 8), and ACTN2 (actinin, alpha 2), known to be regulated during EBV infection, were differentially expressed in post-infective fatigue cases. Several of the differentially expressed genes affect mitochondrial functions including fatty acid metabolism and the cell cycle.”
https://www.ncbi.nlm.nih.gov/pubmed/16448567


So for me and my daughter, when we have an increase in weakness, we can often see it linked to a recent/ongoing virus, infection, chemical/allergy exposure. All of these have been shown to weaken mitochondria. For us, when we take our already challenged mitochondria and add in these mito damaging activities, we see an uptick in symptoms. And sometimes we see an uptick for no reason at all.

I'm hoping your weakness goes away soon and never returns.

 

Thanks, @BeautifulDay !

Good to know at least I'm not the only one.

 

I've now received two identical pieces of input from others:

My knee might be subluxing a bit, depositing me on the ground. It's instinctive to let oneself drop in these circumstances. I'm one of those pwME who also has a diagnosis of EDS, so this could well be the case.

Doesn't explain the weak hand grip, but that could be generalized weakness? Siiigh.