Temporary paralysis I need your Insights

[andyguitar]

I spent several years working for someone with Severe ME. Drug side effects can take weeks to go. So it could be the Midodrine. The level of sodium in the blood does not always relate to its levels at a more local level. I dont understand how it all works. Neither do the the Docs! A lot of medicine is not much more than speculation. What i know for sure is that during the ME outbreak at the Royal Free in the 1950s many patients had the same kind of problems you are having. All made a full recovery without treatment. The sodium channel CAN close if your serotonin levels have got elevated. Much of the research into how all that works is yet to be done so i will spare you all the details- it would give you a headache! Just keep in mind the fact that many people have experienced what you are going through and made a compleat recovery. You will probably get some who tell you it could be something terrible. Very unlikely as it happened suddenly and has not progressed.

 

[Jenny TipsforME]

@andyguitar it does actually feel progressive and not like ME (which I have had for 19 years at different levels so do have a fair idea about ) which is why I'm trying to get to the crux of the issue. I'm not reassured by the suggestion that other people go through this and make a full recovery seeing as we don't know yet what 'this' is.

It also isn't a fair understanding of ME to suggest that most people get well eventually without treatment, that isn't generally what happens though some do go into spontaneous remission. The exception is that children have a good chance of recovery.

"Few Return to Pre-illness State of Functioning

In about 40% of people with ME/CFS, the condition will improve over time, though recovery rates from the condition are generally quite low (less than 10%). The condition may also take a relapsing/remitting course, so individuals who appear to have recovered, may actually be in remission. For 5-20% of people, the condition is degenerative. Some studies suggest that prognosis is better for those with less severe symptoms, and who developed the condition at a younger age (childhood-young adulthood), though these findings are not consistent. It is clear that few people will return to their pre-illness state of health and functioning.[10][11][12]"
http://me-pedia.org/wiki/Prognosis

 

[andyguitar]

The point I am trying to make is that about 30% of those affected during the Royal Free outbreak experienced the sort of paralasis symptoms you have. I am not suggesting that people with ME in general get better without treatment just that the hundreds affected at the Royal Free did. What it says in me-pedia about prognosis includes CFS. The statistics which suggest only 10% recover from the condition are total skewed by including people with CFS which could be anything. The NICE guidelines are also based on the same flaw. As to what Me is. In my opinion it is a metabolic blood disorder caused by elevated levels of Serotonin. Levels spike, cause biochemical chaos which continues long after the spike has gone.

 

[Jenny TipsforME]

Paralysis definitely can be a ME symptom but what I’m experiencing doesn’t fluctuate with other ME symptoms. With ME I tend to have worse symptoms overall. When I had the 11 hour paralysis I could think clearly and light didn’t hurt my eyes. These would be the first things to go for me if my ME is getting worse.

Of course it is possible that what is wrong with me is the same as the Royal Free people but I’m not convinced this is likely, and we don’t really know enough about what was going on in that outbreak. I didn’t have paralysis as an early symptom of my ME and although I’ve known other well people get ME it didn’t occur in that type of outbreak pattern.

 

[Jenny TipsforME]

I had the OT assessment visit today so flagging after that. It was an hour and a half. What was unusual was asking about my overall health. I realise doctors don’t actually do this

She did seem very intrigued. My legs weren’t working when she was here which was somewhat useful. She labelled it as a failure to initiate movement without loss of strength, particularly hip flexion muscles. She’s never come across it before and she’s going ask their neuro team for ideas.

There’s some practical home accessibility things I’m going to try though.

She seemed to know about ME which was encouraging and knew that exercise wouldn’t improve it. She has a patient who is paralysed with ME, but it sounds like in that more typical very severe ME way where it doesn’t come and go.

 

[andyguitar]

Paralysis in ME does fluctuate. I have seen this on a weekly basis over a period of several years when working for someone with the severe version. I an lucky in that my health is good and I have been able to study in great detail topics such as the Royal Free outbreak. I would not post anything about ME unless I was 75% certain it was correct. The outbreak at the Royal Free was probably caused by a rare species of fungi. I rate the chance of it being a virus as zero. If you look at "Ergot poisoning" you will see what a fungus can do. Not suggesting anyones probs are caused by ergot. Cont

 

[andyguitar]

Your symptom picture has clearly changed. This is not that rare. Unlikley the neuro team will come up with much I'm afraid. They could try another EMG. But they wont be able to get their heads round the idea that your para symptoms are caused by elevated Serotonin at the motor neuron junction. This is nothing to do with motor neuron disease. It is not progressive. It is not "Serotonin Syndrome". I call it " Hydroxytriptamine Transport Disorder". Ever heard of "sleep paralysis"? A similar biochemical event is what you are experiencing. It could be that the Serotonin receptor HT1a is being blocked. Best treatment i have found for this is Doxycycline 200mg twice a day. This drug has a property unintended by the manufacturer.

 

[andyguitar]

And it is that property that may help. It's benefit has nothing to do with it being an antibiotic. For anyone who is reading this post: Be very carefull when reading what has been written about Serotonin and it's receptors. You need to dig very deep, and look at scientific papers that are reliable AND have been peer reviewed to understand this subject.

 

[Jenny TipsforME]

@andyguitar doxycycline makes me vomit. My body thinks it’s poison I have problems with a few antibiotics.

What I’m experiencing isn’t like sleep paralysis, which I have previously experienced.

I know it’s not rare for ME Symptoms to change. My ME has varied widely, but I feel you’re not listening to my patient voice that this doesn’t seem like ME.

ME has a feel to it which is hard to describe. I would be unlucky to have something entirely unrelated to ME and POTS, so I think it is a comorbidity of some type but seems linked to POTS fluctuations but it does not map onto my ME fluctuations (plus people I’ve found online with similar experiences are people with POTS and/or Periodic Paralysis, sometimes ME as well but this pattern doesn’t seem to occur with just ME). I’m feeling frustrated because I’m reading that you’re not really taking in what I’m saying on this thread, your phrasing comes across as a similar attitude to medics who dismiss new problems as being down to ME.

Once you have a ME diagnosis every new symptom is dismissed this way and they explicitly aim not to do tests (especially in UK). It is very dangerous because having ME certainly doesn’t protect you from other (often treatable) conditions and can make some other conditions more likely. It is a big problem for us in terms of medic attitude towards ME and puts our health at further risk.

I have rusty neuro knowledge from uni and your serotonin theory doesn’t seem like an obvious answer for my current issues, but I guess if there was a correct, obvious answer doctors probably would have got there already, so I’ll look into that

 

[Jenny TipsforME]

An interesting point with the OT is although she has at least one ME patient with paralysis (mentioned in an Alexa phone call anecdote) she was quite clear that she had never come across the problem I was demonstrating and that it seemed very specific. Her knowledge obviously isn’t the same as a doctor, but she wasn’t seeing it as a milder version of his paralysis.

We’re looking at practical aids to move my legs. So if anyone’s reading and has similar problems it would be worth sending me a personal message (either if you’ve found techniques or you want to hear about what I try).

I’m waiting for my Occupational Therapy haul delivery

 

[Jenny TipsforME]

I don’t think this directly applies to me in terms of the appropriate diagnosis but as example of what does happen sometimes when doctors ignore new symptoms from people with ME (even if they’re rock stars as in Naomi’s case)

"In the weeks leading to Weisstein’s death in 2013, her doctor insisted she did not have cancer, despite her ongoing concern of vaginal bleeding. Though eventually diagnosed and admitted to Lenox Hill hospital for cancer, the doctor there failed to find a benign tumor near her stomach—even though she could point right to it. The tumor kept her from eating and drinking, but the doctor insisted that she just wasn’t trying. Weisstein died on March 26, 2015 of ovarian cancer—a death that was certainly hastened by the medical profession’s dismissal of a woman’s pain."

 

[Gingergrrl]

@Jenny TipsforME From my own experience, I agree with you that people can have more than one diagnosis at the same time and if your gut instinct is that your leg paralysis episodes are separate from ME/CFS, I would listen to your instinct and continue to pursue it.

I cannot remember, but will your Neuro still be testing you for the paraneoplastic autoantibodies (like the potassium channel abs that can cause periodic paralysis)? Or did this already occur? I wish I had time to go back through your whole thread!

I was dismissed by my former GP in 2013 as having "CFS" and told there was no treatment. She completely missed that I had both Hashimoto's Disease and POTS at that time. Even someone with fatal cancer (not you and this is just an example!) can have other medical issues that are totally separate from the cancer but I find that sadly very few doctors understand this concept.

 

[Jenny TipsforME]

@Gingergrrl the other issue with ME and comorbidity is that if a proportion of people get a symptom it is seen as part of ME but it might instead be something that is simply more likely if you have ME. In other words, just because other people with M.E. experience something that doesn’t mean that symptom they’re experiencing is the ME itself. While doctors are reluctant to investigate and treat ME it can be very useful to define something as separate from ME. I do also think this is valid in my case, but if ME was treated with more respect it might not be as necessary.

At the moment nothing’s happening due to the neuromuscular guy referring me back to my GP rather than back to the first neurologist. This effectively resets everything to waiting for months and months, so I’m going to go private and have identified the person who seems most relevant locally. He also works in the same department as the other two on his NHS days, not sure if this is a positive or negative :thumbdown:

But right now my ME is actually worse, from sick on Sick 3 weeks ago (and perhaps starting fludrocortisone). I think that does muddy the waters as well as making going to appointments unappealing. It is probably better to make an appointment for when this problem is bad but my ME is more like my normal. Both things have fluctuated, though not in the same pattern, and the walking issue now affects me most days. Obviously if my current flare continues I won’t wait for ages.

It’s a neurologist I’m planning to see but I’m going to ask him to authorise the Oxford autoantibodies tests. If I’m paying I don’t imagine this will be a problem as they are relevant to POTS/ME, even if they turn out not to be relevant for my movement problems.

I’m also looking into genetic testing eg for Periodic Paralysis. There’s potentially free testing for this.

 

[andyguitar]

I was'nt suggesting you should have no more medical investigation, you might remember i said another EMG might be an idea. Yes things other than ME do get missed by Docs . On the subject of Doxycycline: Some Docs and pharmacists say it should be taken away from food. If you had that advice and followed it that might be why it makes you sick as it is designed to be taken with food. So you think that if Serotonin was the problem the Docs ect would have figured it out by now? Scince the 1950s the standard theory of ME has been "It's a virus/immune dysfunction" or "It's all in the mind". In those circumstances the chance that any of them lot- or the alternative health lot- would look for the most obvious answer is remote. Why is Serotonin the obvious answer? The well documented peer reviewed scientific evidence that elevated Serotonin causes "Central Fatigue". All I have done is to crunch my way through hundreds of peer reviewed scientific papers and many books to see if it is possible the biochemical mechanism that causes "Central Fatigue" can cause all the symptoms of ME. It is. The bad news is that many of the commonly used nutritional and herbal/ drug treatments make it worse. Unlikley any of "Them lot" will admit it.

 

[ComtesseDeLaCouche]

Just a thought, Jenny - is it possible you were exposed to any unusual/new-to-you chemical prior to the onset of the paralysis, eg paint, pesticide, anything in new furnishings or carpet, etc?
Apart from the 'ME-crash'-related type of paralysis, I did experience a different kind of temporary, partial paralysis at what my ME-diagnosing doctor agreed was likely to have been my original onset in early 1967- got up one morning to find I couldn't lift my feet off the ground to walk, let alone cycle to school (I was supposed to be starting at my new school that day.) It felt like large concrete blocks were attached to my feet. Something in my brain felt odd/wrong.
No-one believed me, parents laughed and called it a silly fuss/ 'first day of school nerves', though I'd been looking forward to it so much, having already made friends there, and hadn't actually been very nervous at all. I did somehow make it to school, just (I eventually managed to persuade my father to take me in the car). In a weak and woozy, exhausted daze all that day, and for months afterwards, with multiple ME-like and OI symptoms, lessening a bit over time. I just covered them all up as best I could, since I didn't think anyone would ever believe me, and got on with my life, albeit in a somewhat reduced fashion. I had no idea what was wrong with me, and hoped by ignoring it, it would somehow cease to exist...
Anyway, skip forward to 1995 when I became too ill/dysfunctional to keep this weird secret affliction hidden any longer, from myself anyway. Gradually came out of denial, started doing the detective work, trying to remember when/how the symptoms had originally started, and recalled that when we moved to that new home, my parents had had an enormous expanse of new carpet installed, that covered the floors of the 2 large main downstairs rooms in our house. It stank, and I could hardly bear to be in the room with it; it made me feel woozy, but I didn't have much choice. The carpet had what the salesman told them was the latest wonderful new innovation - it was impregnated with pesticide - 'to protect it from moth damage'... given the time period, likely to have been DDT, which was madly fashionable at the time. After just a few weeks in the new house, I woke with those paralysing symptoms...
Later that same year, my elder sister came home from University for the holidays. Within a week or so of being in that house, she'd taken to her bed with something seemingly like what I'd been experiencing, but hers was taken seriously, and was diagnosed by a GP as Glandular Fever.
(I was eventually diagnosed with ME/CFS in 1996, my sister in 2001.)
So sorry about the over-long story, and for the speculative nature of much of it; maybe some of it could be relevant to you and maybe none, but I thought I'd just put it out there for you to judge. Oh, yes, and I wondered whether your stiff/sore neck could've been caused by swollen glands, in response to some related chemical or viral etc assault. It's possible my sister's original 'GF' diagnosis may have been simply due to her having swollen glands that were actually in response to the pesticide, or something else. I realise they surely would have checked all that sort of basic stuff for you at the hospital or doctor's, and/or I may have missed something you already said; my apologies if so; I didn't have the mental energy to read the whole thread...

 

[andyguitar]

Many pesticides work on both Serotonin and Dopamine. Some of the many effects of pesticides are to cause paralysis and stop the pest from feeding. Could it effect humans in the same way? Probably if the dose was big enough.

 

[Gingergrrl]

@Gingergrrl the other issue with ME and comorbidity is that if a proportion of people get a symptom it is seen as part of ME but it might instead be something that is simply more likely if you have ME.

That makes a lot of sense and you explained it really well.

At the moment nothing’s happening due to the neuromuscular guy referring me back to my GP rather than back to the first neurologist.

This effectively resets everything to waiting for months and months, so I’m going to go private and have identified the person who seems most relevant locally.

It sounds like going private is your best option now.

But right now my ME is actually worse, from sick on Sick 3 weeks ago (and perhaps starting fludrocortisone).

Did you get worse when you started the Florinef (fludrocortisone)? I did HORRIBLE with Florinef in 2014 regardless of the dose. But I do great with Midodrine which I know also did not work for you.

It’s a neurologist I’m planning to see but I’m going to ask him to authorise the Oxford autoantibodies tests. If I’m paying I don’t imagine this will be a problem as they are relevant to POTS/ME, even if they turn out not to be relevant for my movement problems.

Are the Oxford Autoantibody tests similar to the Mayo tests (paraneoplastic panel) or similar to the Cell Trend tests from Germany (or both/neither)?!

I’m also looking into genetic testing eg for Periodic Paralysis. There’s potentially free testing for this.

That would be awesome. Please keep us posted and I plan to continue to follow your journey.

 

[Jenny TipsforME]

Thanks @Gingergrrl

Did you get worse when you started the Florinef (fludrocortisone)?

I didn’t immediately get worse with it but I was immediately worse after a bout of diarrhoea, so that makes me think it was the more likely culprit. I’m not certain though.

Something I’m finding hard with managing POTS and this movement issue is how much electrolytes to have. My cardiologist is always telling me to have more salt and I know especially with florinef it only works if you have the salt to retain. Yesterday I didn’t have sodium tablets or electrolyte solution and I didn’t have an episode of not being able to walk. It’s likely coincidence but I’m trying it again today, so far ok. Most days I’m having trouble for at least a portion of the day now.

I don’t know re cell trend and Mayo.

 

[Skycloud]

I just want to say that I'm sorry you're going through this and I hope you find some answers and hopefully a solution soon.

 

[Jenny TipsforME]

Thanks @Skycloud

Re pesticides/unusual chemicals, it is possible though nothing springs to mind. I am sensitive to chemicals which are supposedly safe to use. I’ve been putting off new carpets for years for that reason. I can’t think of anything that was new last May and we’re now consistently using. Both major paralysis episodes were after a shower so could perhaps be something in the bathroom (a bath is also a frequent trigger of less severe issues). I’d thought this was more about temperature/OI type stuff.

I’ve had some discussion with people in Periodic Paralysis groups and they say my experiences match theirs. Of course I realise this doesn’t automatically mean it is the same thing going on. It would fit with the association with POTS though which is also to do with electrolytes (and POTS is sometimes comorbid with PP). I think I need to work out more whether it is triggered by PP triggers (which are eg high/low sodium/potassium, cold/temperature change, glucose, exercise/rest, infection). When I did the diary before it was too frequent to pick out the pattern well. Even if I don’t get a diagnosis and treatment I may be able to gain some control through avoiding tiggers if it is something like this. I haven’t heard back about genetic testing yet.