Temporary paralysis I need your Insights

[Gingergrrl]

@Jenny TipsforME Am so thrilled that you can walk the stairs again! I don't understand most of the scientific parts but have not been able to climb even one stair in about two years. Luckily my apt is all one level and the bldg has two elevators (100% wheelchair accessible) so this is not an issue for me right now.

But when we go out, I occasionally find places w/broken elevators or that are not up to ADA laws/codes and then I just cannot go into those places. My muscles (while seated) are significantly stronger from IVIG and I have had many instances inside of the apt where I can walk for 5-10 min without wheelchair but very slowly and on a flat surface.

I also have POTS/Dysautonomia and sometimes compression stockings are helpful but sometimes useless. Prior to IVIG I could not even put them on by myself and now I can put them on w/no problem. So I can see my muscles and breathing are stronger (I can now open/close front door, can prepare my own meals, etc) but no where to the level (yet) that stairs would be possible.

But your post/update made me very happy to read that maybe I can get there some day!!! Have you been tested for any of the ion channelopathies yet?

 

[Jenny TipsforME]

Still no news re any further tests or appointments. The NHS moves at glacial speed unless you have chest pain. It seems to be at breaking point this winter, very underfunded

I think the type of muscle strength fluctuation I'm experiencing isn't typical for ME. My ME has fluctuated greatly over years, but it doesn't tend to suddenly improve. When I hear stories of people with severe ME becoming paralysed you don't tend to hear about them then suddenly walking upstairs quickly. My sister also had weakness getting upstairs with her ME but I don't remember it suddenly coming and going.

@Gingergrrl

 

[Gingergrrl]

@Jenny TipsforME I know what I'm about to say is impossible w/the NHS (and applies only to the fantasy universe where everyone has access to good healthcare) but I wish both you and your sister could be tested for calcium and potassium autoantibodies/ channelopathies. Have either ever questioned if ME/CFS is your diagnosis or are you fairly certain it is accurate?

 

[Jenny TipsforME]

@Gingergrrl ME is a good fit for what I've experienced the last 19yrs, starting with mono/EBV. Of course autoantibodies as a problem wouldn't rule out ME and maybe important in many people's ME (eg group which respond to Rituximab).

But I was diagnosed by exclusion for ME so it's always possible that a better fit was missed.

Autoantibodies are also implicated in POTS (adrenergic and acetylcholine ones) and I have that diagnosis confirmed by tilt table.[ I'm sort of guessing that if your body is prone to one type of autoantibody body problem this would make others more likely. I've no idea if that's right.]

My partner is working so we could afford to go private at some point. It would be tricky to do this at the moment, part way through NHS investigation, so I'm thinking I'll see how far the NHS will go re testing and getting to answers. I'm partly regretting not going private straight away back in May, at this rate the process will take a year. I feel like there's a medical system somewhere where they may have tested me more thoroughly when I was in hospital unable to move, rather than sending me home still unable to move! Perhaps that's not about healthcare systems though, more about having a pre existing ME diagnosis...

 

[Jenny TipsforME]

Today's experiment is a corset and no support tights. I got downstairs fine but my orthostatic intolerance is worse (this method is presumably increasing leg blood pooling).

I feel like I should be dressed like

Or

The reality is I put corset on under pyjamas!

The next variable will be trying again with no compression garments, in case I'm just randomly able to use the stairs again...

 

[Gingergrrl]

Of course autoantibodies as a problem wouldn't rule out ME and maybe important in many people's ME (eg group which respond to Rituximab).

This is what I suspect as well.

Autoantibodies are also implicated in POTS (adrenergic and acetylcholine ones) and I have that diagnosis confirmed by tilt table.[ I'm sort of guessing that if your body is prone to one type of autoantibody body problem this would make others more likely. I've no idea if that's right.]

I have TTT confirmed POTS, too, and tons of autoantibodies. I have an official diagnosis now of "autoimmune POTS" and it seems if you are prone to auto-abs, then you most likely are going to have a lot of them like you said.

My partner is working so we could afford to go private at some point.

That sounds great and hoping it happens soon (or as soon as possible)!

 

[Jenny TipsforME]

I think the compression garments might have been a red herring because I was also able to use the stairs without them when I tried again.

I saw Transverse Myelitis being discussed on another thread. That's an interesting cause of paralysis and related to immune issues
https://www.ninds.nih.gov/Disorders...on/Fact-Sheets/Transverse-Myelitis-Fact-Sheet

 

[Jenny TipsforME]

Well I had the EMG on Tuesday. There weren't obvious results during the test, but the doctor has to go away and analyse them. The main thing I noticed is my lower leg was definitely louder than my upper leg (indicating proximal weakness). It is an unusual experience to audibly hear your muscles working! The doctor said that picking up particular diseases is more to do with the rhythm of the sound though, and he wasn't picking up characteristic rhythms.

The test is quite unpleasant. It seems a bit like it is an unethical secret service technique. However, the actual level of pain wasn't as loud as I've often experienced with ME myalgia. It's a bit worse than acupuncture and then the muscles feel tender for a few days.

With this test picking up the proximal muscle weakness again I'm wondering if other pwme get this too? I think this would be handy to know before my next appointment. Possibly this needs a new thread? Dr Google says it indicates myopathy. It doesn't seem to come up to do with ME or CFS.

 

[Gingergrrl]

There weren't obvious results during the test, but the doctor has to go away and analyse them.

I wish the Neuro who did my EMG and nerve conduction test (about a year ago?) would have taken time to analyze the results. He was purely testing me for LEMS (which a single fiber EMG is the gold standard yet he did not do one). Mine showed some abnormalities including my left phrenic nerve to diaphragm only working at 57% (vs. right phrenic nerve at 92%). He finally told us (after many attempts to contact him) that the results were "normal" but this is not normal IMO. My main doctor agreed it was not normal and I spent close to a year trying to find a Neuro who was interested in my case but could not find one. But my main doctor is doing everything humanly possible to help me and we suspect that all of my auto-antibodies are weakening my muscles and the improvement from IVIG backs this up IMO.

The test is quite unpleasant.

Agreed, it is not fun LOL.

Dr Google says it indicates myopathy. It doesn't seem to come up to do with ME or CFS.

I suspect that most of us (not all but a good percentage) have medical issues, either in addition to or completely separate from, ME/CFS and if given the opportunity to search for them by a doctor(s) who is interested enough, they will be found. It doesn't mean that science has a treatment or cure, but at least an explanation will be found other than ME/CFS. This is just my opinion.

 

[Valentijn]

With this test picking up the proximal muscle weakness again I'm wondering if other pwme get this too?

My muscle problems are more proximal too, in the thighs and upper arms. I can type pretty much all day if my wrists and forearms are supported. But I suspect I have a genetic mitchondrial myopathy (MELAS) where the weakness is known to be proximal, and I'm not sure if muscle weakness has been examined as proximal versus general in ME patients.

 

[Jenny TipsforME]

@Valentijn yes mitochondrial myopathy is one of the possibilities from the searches I've done, so your experience may not mean it is part of ME. Though I'm crossing my fingers you don't have MELAS.

It doesn't really come up on PR as people saying they have this issue, but perhaps they'd use different language?

 

[Jenny TipsforME]

@Valentijn for you does it fluctuate so that it isn't a permanent weakness?

For the last 5 years I'd always get it if I attempted to go out without a wheelchair, so some element of exertion intolerance is involved as an immediate problem (not just PEM - which I also get but not normally as this symptom).

But generally in the house I walk like a well person. I can usually walk up 50 degree stairs without hesitation (older relatives take longer than me). Then I have episodes from a few hours, to the recent one of weeks, when I can't lift my legs to go up or down the stairs. Then strength comes back without any obvious deconditioning.

 

[Valentijn]

@Valentijn for you does it fluctuate so that it isn't a permanent weakness?

My baseline doesn't fluctuate much. But exertion can exacerbate it quite a bit. Such as a thigh muscle not working at all for an hour after walking too much in an airport. And the wrong drugs (metformin) can have a big impact as well.

But generally in the house I walk like a well person. I can usually walk up 50 degree stairs without hesitation (older relatives take longer than me).

I can walk normally in the house, when I'm well rested and only up for 5-10 minutes every hour. Stairs are always a struggle, however, with going down just as bad as going up. There can be episodic periods of muscles not working in MELAS, but it sounds like it would typically be one half of the body (right or left).

 

[Jenny TipsforME]

@Valentijn usually my issue is very symmetrical although in the recent patch the right side took a little longer to improve walking on a flat level. A friend/neighbour who works in a stroke unit had come in to help me and she commented on it. It had come on the same both sides though which isn't stroke-like.

 

[Jenny TipsforME]

Also re stairs, I actually find trying to walk downstairs often triggers the problem. Going upstairs I'm usually ok if I keep going quickly.

But I also get a different type of weakness sometimes which is more like frailty. In my head I label this as ME weakness, possibly because the first time I saw it was when my sister had severe ME. When like this I move slowly and my partner usually has to assist by sort of pushing from behind (I have some power but not enough). It seems qualitatively different. It is more like an old lady losing strength. The other type is like someone really struggling in rehab after an accident.

 

[Lindberg]

@Valentijn I understand that you have developed an analysisprogram testing for rare diseases? Do you know if it shows any type of genetic mutation regarding periodic paralysis? If the raw data comes from 23andme?

 

[Valentijn]

@Valentijn I understand that you have developed an analysisprogram testing for rare diseases? Do you know if it shows any type of genetic mutation regarding periodic paralysis? If the raw data comes from 23andme?

I don't know if any of the SNPs have been associated with periodic paralysis. The program is at https://sourceforge.net/projects/analyzemygenes/ and it's a lot more effective if also downloading and unzipping remarks.zip and ten_percent.zip from https://sourceforge.net/projects/analyzemygenes/files/Databases/ into the same folder.

 

[Jenny TipsforME]

@Lindberg there's a Facebook group discussing periodic paralysis and SNPs. The consensus seems to be that 23andme is fairly useless for this.

However, on LiveWello using 23andme data, I have quite a few SNPs associated with PP. But the incidence seems way too high for a rare condition. I think these are SNPs which people with PP often tend to have (but not the SNPs that cause PP). For example, red hair often goes with freckles, but freckles doesn't cause red hair and lots of people have freckles without having red hair.

The causal information is simply missing from 23andme (they don't bother to test for some rare diseases, which becomes frustrating.

Edit this is the Facebook group

 

[Jenny TipsforME]

I've just started a poll re muscle weakness patterns as I haven't found clear pre existing information

Please respond http://forums.phoenixrising.me/index.php?threads/poll-whats-your-pattern-of-muscle-weakness.50589/

I'm hoping this will be useful for my next neurology appointment.

 

[Lindberg]

Thank you, @Jenny TipsforME and @Valentijn! Only wishes things would be easier to find out... Can't wait for research that can explain what happens during paralysis. For me it somehow seems connected with the immunsystem and dysautonomia - but time will tell...