Temporary paralysis I need your Insights

[Lindberg]

Yes, I was surprised how good it was - just wish every neurologist would know it by heart... Or, at least be interested in reading it!

 

[kangaSue]

Jeez, just a brief summary eh! That'll keep your doctor busy for a month of Sundays.

I said that "25% of those with POTS had alpha3 nicotonic acetylcholine receptor antibodies". Mayo has revised their stance on this and now say only about 5 % of POTS patients are found to have this antibody.

Just looked up @Gingergrrl mention of Angela Vincent. She has a refreshingly honest bio page. Most people spin their CV into a grand narrative that was always planned

.
I think Dr Vincent is now retired and no longer involved with patients.

Oh I'm fairly sure I have cerebral hypoperfusion issues but I hadn't realised that's called a separate Syndrome. I just thought most people with POTS would have that as a symptom. I tend to lie down to do any difficult thinking!

I've been taking another look at a drug for me to take for intestinal ischemia, cilostazol. It can help with cerebral hypoperfusion too;
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4145952/

 

[Jenny TipsforME]

@kangaSue I'm not intending to mention all of those things to my doctor! I don't imagine that would end well...

But useful to have in my mind things other people think it could be.

 

[Gingergrrl]

I think Dr Vincent is now retired and no longer involved with patients.

That is my understanding as well. I tried multiple different ways/times to contact her but was never successful. I thought if someone is already a patient in the UK (vs. me in the US) it might be easier but I could be wrong.

 

[Jenny TipsforME]

Well I've had my appointment and the EMG did show up a problem. It hasn't really pinned down what's going on yet (probably a type of myopathy, channelopathies are also in this category), but myasthenia gravis was ruled out.

they found a few minor spiky motor units

If I understand correctly this is what that is

PRIMARY MUSCLE DISEASE
In general, the EMG in primary muscle disease of any origin is similar and making distinctions between, say, hereditary and acquired myopathy is difficult. Motor unit potentials are small and spiky and the recruitment pattern becomes full with just a small contraction. In inflammatory muscle disease where there is active degeneration of muscle fibres, fibrillations may be seen, but this is not universal or specific. In muscle diseases which show large variation in fibre diameter, such as the muscular dystrophies, there may be large motor units on a background of small spiky units, presumably arising from large diameter fibres. In cases of Lambert-Eaton myasthenic syndrome (LEMS), the EMG can look myopathic because so many muscle fibres have neuromuscular block; the EMG becomes more normal if the patient is able to maintain a voluntary contraction. In any case where a myopathic EMG is found, LEMS should be considered and should be investigated by measuring the amplitude of a compound muscle action potential evoked by nerve stimulation before and after exercise.

http://jnnp.bmj.com/content/76/suppl_2/ii32

So now I'm being referred to a muscle specialist, which I expect means a few more months without answers and quite likely a muscle biopsy...

 

[Valentijn]

Well I've had my appointment and the EMG did show up a problem. It hasn't really pinned down what's going on yet (probably a type of myopathy, channelopathies are also in this category), but myasthenia gravis was ruled out.

Can we start a betting pool?

But seriously, I'm very glad that there's some progress made in both finding a problem and in narrowing it down a bit.

 

[Jenny TipsforME]

Actually I *think* the results from EMG also point to the same things as using that paper @Lindberg shared

@Lindberg that's a good paper, very systematic
I fit either

[Pattern 1 (unspecified myopathy) quote]

Or
PATTERN 9 EPISODIC WEAKNESS: DELAYED OR UNRELATED TO EXERCISE

• Periodic paralysis
  • Ca++ channelopathies (hypokalemic)
  • Na++ channelopathies (hyperkalemic)
  • Andersen-Tawil syndrome
  • Secondary PP (thyrotoxicosis)
• Other: Neuromuscular junction diseases [except I think he said NMJ issues were ruled out]

Which does actually indicate how good we've got on here as amateur medics as these were some of the initial suggestions!

 

[Gingergrrl]

But seriously, I'm very glad that there's some progress made in both finding a problem and in narrowing it down a bit.

Me, too, and I have been following your thread from the beginning and thrilled there is finally some progress being made even though it is super slow... (through no fault of yours)!

 

[Jenny TipsforME]

Something I've just come across while looking for something else, is that lack of vitamin D can bring on myopathy. I do take D3 supplements so I don't expect this applies to me, but worth knowing if you're housebound and putting all weakness down to ME. That problem can be treated with D3 and calcium.

https://www.ncbi.nlm.nih.gov/pubmed/19534335

 

[Lindberg]

@Jenny TipsforME that's interesting because eventhough I can have an episode of myotonia/PP during the summer, it is much more seldom than during jan-march. It is a pattern that repeats every year. I have thought it might be due to lack of D-vitamin but never read anything about it regarding myopathy. Unfortunately, I can't tolerate D-vitamin supplements so not much to do about it...

By the way, really nice to hear that you are being referred to a muscle specialist. It will be interesting to hear what he/she has to say!

 

[Jenny TipsforME]

@Lindberg the other thing they took was calcium. Our situation is completely different. These were heavily covered Muslim women in the Middle East on a culturally low dairy diet, so missing Vit D and calcium to help absorb it. But many pwme are stuck indoors and can't tolerate dairy. It would be easy to end up with the same problems. Also super easy to fix.

I've bought some calcium. I have a couple of SNPs that may inhibit VitD absorption (I was on the low side at a time when I was very tanned AND taking it as a supplement).

 

[Jenny TipsforME]

Also, if anyone is coming to this thread because you're experiencing paralysis, download the booklet here http://hkpp.org/pursuing-a-diagnosis

It is very handy. I'm going to complete the diary it suggests and make a family tree like it suggests.

I've been freaking out about potential progressive myopathies, but I've decided to look into it being Periodic Paralysis and ignore other possibilities unless they're proven to be the problem.

Looking into it more there's confusing overlaps with ME and POTS tbc

 

[Jenny TipsforME]

One very interesting thing is that exercise can lead to problems the next day. I think mimicking PEM though specific to movement problems.

A patient (trustworthy source?) reckons the experience can be similar to POTS: fatigue, tachycardia, presyncope and so on (though not the standing bpm increase which I do get). I'd expected that it was restricted to just not being able to move (it's not got a Syndrome tacked on!).

Triggers are related to sodium, potassium, glucose, exercise, epinephrine, temperature. I'm wondering if there are some common causal factors with ME/POTS.

 

[Lindberg]

Regarding D-vitamin, calcium etc are there probably a lot of things that needs to be in perfect level and balance in order to reduce the episodes. It's quite a complex picture and a lot of overlapping with other conditions - not at least POTS. One has to learn ones own triggers to avoid episodes but it's not easy...

By the way, @Jenny TipsforME have you done the test where you put something icy cold on the eyelids for a while and then try to open them? Neither me or my kids can do it without problem which I understand is common for myopathy.

 

[Jenny TipsforME]

@Lindberg no I've not done that

 

[Jenny TipsforME]

I'm starting to think about the neuromuscular specialist appointment coming up. A new doctor is always a concern...

Also feeling disheartened today because although I'm functioning well cognitively and don't feel particularly ill (a relative thing with ME, I'm not free from symptoms at rest), I can't walk across the room at the moment.

In myself I feel well enough to go out and do something but actually getting round my house is a real problem. We live in an old English terrace house. I really love our house but the stairs are steep (and too narrow for a stairlift) and the doorways/hall too narrow for my electric wheelchair. If I get a progressive or non treatable diagnosis we're going to have to make major changes

Today we'd hoped I could go out to an area of the city which has been completely redeveloped since I last saw it. Of course with ME I'm used to this type of disappointment but it feels different because I don't feel too ill to go out I just can't get out!

I'm having episodes like this every day now (though not the constant issue I had for a month in the winter). I'll be walking in the house normally then I'll get stuck and not be able to move. A few hours (or sometimes minutes) later I'll be able to move normally again. My partner and I have developed this comical way of walking where she'll lift my legs a bit like I'm a marionette! It's like the movement has gone, not that my strength has gone. This works ok if she's home and I need to go to the loo but not for much else.

Re the new doctor I'm worried about explaining it properly because you do get weakness and paralysis with ME. I just don't feel mine follows a ME pattern. It doesn't come on at the time of PEM and doesn't correlate with the fluctuations of other ME symptoms.

On the other hand, perhaps the EMG abnormality should be expected in ME, but doctors here expect ME not to show biological abnormalities. I don't want to be incorrectly diagnosed with something else just because doctors don't understand ME.

Sorry this post was a bit of a moan really.

 

[JaimeS]

Re the new doctor I'm worried about explaining it properly because you do get weakness and paralysis with ME. I just don't feel mine follows a ME pattern. It doesn't come on at the time of PEM and doesn't correlate with the fluctuations of other ME symptoms.

I agree, Jenny, that this is not the paralysis I experience with ME, or that I consider characteristic of ME. In my case I feel like I can move, but that it is many, many times harder than it ought to be. When the effort is many-fold enough, it's effectively paralysis. I agree that it's more common in PEM, but sometimes I'll just underestimate the degree of effort necessary to take a step and go out at the knees. Since our energy levels fluctuate so much, even day-to-day, I think this kind of faulty projection must be common.

I really hope you get some answers soon, and that those answers are attached to some kind of therapeutic intervention.

 

[JaimeS]

Just preparing for my neurology appointment on Friday (does anyone else feel like this is preparing for an exam? I get really worried I'll forget relevant details).

This thread has got a little overwhelming, so here's a summary of suggestions:

I'm reminded here of how awesome this community really is. You guys are amazing.

 

[Hell...Hath...No...Fury..]

My partner and I have developed this comical way of walking where she'll lift my legs a bit like I'm a marionette! It's like the movement has gone, not that my strength has gone. This works ok if she's home and I need to go to the loo but not for much else.

Lol my partner used to stand behind me, propping me up, while i stood on his feet, and he shuffled me to the toilet.

Or if going upstairs, he'd grab the back of my jeans and half lift me to lighten the weight of my body. The massive wedgy wasn't great though

These days I usually just get an irritated eye roll and ignored

 

[JaimeS]

Lol my partner used to stand behind me, propping me up, while i stood on his feet, and he shuffled me to the toilet.

Or if going upstairs, he'd grab the back of my jeans and half lift me to lighten the weight of my body. The massive wedgy wasn't great though

I used to stand behind my mom and push her up the stairs when she was at her worst.