Temporary paralysis I need your Insights

[Jenny TipsforME]

push her up the stairs when she was at her worst

This is one of my most vivid memories of when my sister was severe too.

I also sometimes get like this in terms of the stairs, but it feels different and this I label as ME weakness, when there isn't enough strength to walk upstairs by myself but with someone lending extra effort from behind I can do it. With what I'd call leg paralysis this doesn't work because I'm not able to help by initiating the movement. But I can stand still fine (unless POTS also bad) and don't feel weak in one position.

Sometimes when I need comical walking support to get to the bathroom I also find it difficult to initiate the movement to sit down. With ME relapse I have previously found it an ordeal to get to the bathroom but it would more be a relief to sit down, I don't remember having this problem in previous years.

 

[Jenny TipsforME]

Today I had the neuromuscular specialist appointment.

Leading up to the appointment was so stressful it was laughable. Including my electric wheelchair completely collapsing and throwing me out onto the pavement. For a second I thought it would be a trip to A&E as well as the neurology department! I'd also prepared typed notes but had somehow sent the previous appointment notes to my partner to print so I had to rely on my memory (fortunately a fairly brainfog free day).

This neuromuscular specialist was lovely and took me seriously. I want to make a point of saying this because you hear so many bad experiences that I was really anxious about what the new doctor would be like. Actually my experience of consultants as people has been relatively good. My experience of other doctors has been very mixed to the point of being distressing. With this doctor I knew as soon as he shook my hand that the doctor-patient dynamic would be fine (he'd be a great person to educate medical students in that type of thing).

Interestingly he repeated the neurology exam and I was OK, no proximal weakness. This evidenced what I was describing about it being changeable (I hadn't been able to do some of the tasks at all with the previous doctor). This is good news in terms of not looking like a progressive primary muscle condition, he doesn't think it fits anything he specialises in, ruling out myopathy and channelopathy. But he wasn't completely sure and wants to look at my EMG again and I might have to redo it (there's abnormalities but inconclusive).

I wish now I'd asked more about why he was ruling out Periodic Paralysis. I understood why he didn't think it fitted myopathy but I didn't understand what about my symptoms/results didn't match PP.

He seemed to accept me saying that it doesn't fit a ME pattern or vary with other ME symptoms. I separately asked him directly if it could be related to deconditioning and he was clear it wasn't. I thought this might be quite handy to have confirmed by a neuromuscular specialist

He's referring me back to the previous neurologist so the :carousel_horse: between different specialists continues...

I feel mixed emotions about my hospital appointment. It is partly a big relief because the previous doctor was thinking primary muscle disease like myopathy (or a channelopathy). I was expecting it could be bad news about something that would be progressive.

I'm also worried about timescale because my episodes of paralysis/weakness are getting much more frequent, so actually it does feel progressive (without other ME/POTS symptoms getting worse)

 

[JaimeS]

I am rooting for you, Jenny.

 

[Jenny TipsforME]

Thanks @JaimeS

 

[Gingergrrl]

This neuromuscular specialist was lovely and took me seriously.

That is great news!

I wish now I'd asked more about why he was ruling out Periodic Paralysis.

Did the doctor rule it out just based on the neuro exam or will he still test you for the calcium and potassium autoantibodies?

I am rooting for you, Jenny.

Me, too!

 

[Jenny TipsforME]

@Gingergrrl thanks

We didn't discuss autoantibodies but it's not the end of the road because I am referred back to the doctor who I have discussed this with. Basically the guy today was like a second opinion specifically aboutt primary muscle disease/channelopathy

 

[Jenny TipsforME]

Something I realised about myself, when waiting for the appointment, is that taking action/feeling proactive stops me worrying. This is quite bad in terms of having ME! Being an avoidant type of person would be better When I was preparing info for the doctor I felt completely calm, otherwise I had a general sense of anxiety (which went after the appointment, I don't think I have Generalised Anxiety as a disorder).

Now (probably mostly in order to feel proactive ) I'm thinking of a couple of things.

I want to be careful about checking it isn't a weird PEM response to cognitive exertion. I don't think it is but want to test that hypothesis a bit before making too much more noise that's it's definitely not an ME thing. A couple of things make me think this is possible in terms of timing, but it would be odd because it doesn't affect cognitive symptoms :thumbdown:

I'm also thinking I'd like to get my exome tested and look myself for relevant mutations if we can afford it. I think I saw this somewhere for $400. Do you know where I can get it done easily (from UK) at that type of price?

 

[Jenny TipsforME]

Another idea which is possibly too far fetched to mention to a doctor.

Does astragalus reduce it? It seems like maybe

@JaimeS any ideas?
I know people with myasthenia gravis take this herb, but also of course knowing that may create a bit of placebo.

 

[taniaaust1]

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

My elderly friend at times helps me get places when I cant walk by standing behind me and putting his arms around me or under my arms and walking me. or just like u said there, grabbing me by the jeans and half lifting me and moving me forward like that which isnt comfortable due to the wedgy thing lol

He's getting too old though now to be doing things like this.. so last time he was here when I couldnt walk (2-3 weeks ago) I got dragged along the floor throu the house to my bed. Cause of my bad shoulder he dragged me by my feet (which made my pants come down) .

 

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

I got dragged along the floor throu the house to my bed. Cause of my bad shoulder he dragged me by my feet (which made my pants come down) .

Lol this brings back memories from 20 years ago when i still lived with my parents. My mam would on occassion drag me from my bedroom to the bathroom by my ankles because arms were too painful. Then she'd dump me in the bathroom and drag me back to my bedroom a couple of hours later.

I'd often have carpet burns on my arse from doing this

 

[JaimeS]

Does astragalus reduce it?

Astragalus is a great immunomodulator, but I have been poked away from herbs from some negative experiences in the form of reacting in a very overblown manner to herbs I used to tolerate just fine.

Cause of my bad shoulder he dragged me by my feet

I can't 'like' this, @taniaaust1 ... not sure whether to laugh or cry, here!

 

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

@taniaaust1 ... not sure whether to laugh or cry, here!

In our experience it was usually both at the same time

 

[Jenny TipsforME]

I think what I need is a robot exoskeleton http://www.suitx.com/phoenix

• "On a single charge, Phoenix can walk for 4 hours continuously or 8 hours intermittently."

Sounds great! Perhaps prophetic for the people of Phoenix Rising?!

We shall rise up as Phoenix cyborgs!!!

Also I wouldn't have to think about loads of adjustments to the house. Our stairs are too narrow for a conventional stairlift.

I think prices are falling so possibly also more affordable than changing the house. We're thinking possibly downstairs bathroom and move bedroom downstairs or a funny standup stairlift which wouldn't be any good if I then couldn't walk away from the stairs

 

[JaimeS]

ME/CFS Cyborgs FTW...

 

[Jenny TipsforME]

Soooo.... the next twist I'm so annoyed about I didn't update you immediately.

The lovely (in-person) doctor didn't remember the details of what we discussed in terms of writing the letter to my GP/actioning the next step. So he seems to have discharged me from the neuromuscular unit (which is fine in itself) but didn't refer me back to the neurologist. Instead he said something odd about if I have problems in the future my GP might want to refer me back to that doctor!

BUT IM HAVING PROBLEMS EVERYDAY IN A WAY WHICH OVERALL FEELS PROGRESSIVE!

I really thought I communicated that to him. In his letter there's no indication of that aspect. Sounds like I've had a stable problem for years. Also he doesn't describe the nature of the EMG abnormalities to my GP, just that there were some.

I suspect the issue may have come from him looking at my EMG again after the appointment rather than dictating the letter straight away.

Anyway I now need to make an appointment with my GP. If they have to refer from scratch again who knows how long the delay will be Perhaps they won't be inclined to refer me again?

Seriously thinking about going private. Is there anyone in SW England/about an hour from Bristol who would be worth seeing? Perhaps the autoantibodies angle? Or a neuro POTS doctor (still think people with POTS experiencing the same type of thing is going to be relevant).

Or tests I can do first to try and narrow things down. Can you pay privately to get autoantibodies tested in the uk before you see the doctor about the results?

Money isn't really tight anymore but we're not millionaires. Would need to not waste money (theres no way I'd get affordable medical insurance so we'd be paying for every test and appointment).

I'll try the GP first anyway. Perhaps there's a fast track option.

 

[Jenny TipsforME]

Also this week I have had (entirely predictable) PEM. It's hard to describe to doctors, but it did confirm to me how ME symptoms do feel quite distinct from this other thing I'm experiencing. Possibly I've actually been doing fairly well in terms of ME (I'm always nervous to claim improvement in case it tempts fate, not that I believe in that).

On scales of ME disability I'd come out as Severe because of physical limitations. This isn't really right though. I'm mostly doing well cognitively, I'm working part time from home, though reading can sometimes get too much. Social situations tire me quickly still but I can follow and join in the conversation instead of just nodding as if I understand! I seem to have resolved the all-over myalgia (perhaps through supplements). My lymph nodes were tender this week from PEM, but I'm not getting this frequently. I can get completely exhausted and recharge in a couple of nights, not like the torture of early ME when once you get over tired you're stuck for ages.

 

[Lindberg]

Also this week I have had (entirely predictable) PEM. It's hard to describe to doctors, but it did confirm to me how ME symptoms do feel quite distinct from this other thing I'm experiencing. Possibly I've actually been doing fairly well in terms of ME (I'm always nervous to claim improvement in case it tempts fate, not that I believe in that).

On scales of ME disability I'd come out as Severe because of physical limitations. This isn't really right though. I'm mostly doing well cognitively, I'm working part time from home, though reading can sometimes get too much. Social situations tire me quickly still but I can follow and join in the conversation instead of just nodding as if I understand! I seem to have resolved the all-over myalgia (perhaps through supplements). My lymph nodes were tender this week from PEM, but I'm not getting this frequently. I can get completely exhausted and recharge in a couple of nights, not like the torture of early ME when once you get over tired you're stuck for ages.

@Jenny TipsforME, I know what you mean since it's the same for me. It's like I have become better in my ME over the years but I am getting worse in a neuromuscular way - and it really bugs me not to know what causes it. The paralysis episodes during viruses are getting worse and I am more affected in my regular state as well. I am being tested for MG at the moment and I hope they will test for LEMS as well. Actually, what I hope for is that my doctors will not let go until they have done proper exams, bloodtests etc but I don't know if that is just a naive hope...

I am sorry to hear that you are on your own again. It's so hard having to fight for the right kind of help. For what it's worth I think you are making the right choice in wanting to test for autoantibodies. Have they never tested you for MG or LEMS?

 

[Jenny TipsforME]

@Lindberg the neurologist tested me for MG and the general ANA. I was negative on both of those, which I suspect would put a NHS doctor off testing any further. I've heard that ANA is unreliable though. People are quite often negative but do have verifiable autoimmune disorders.

Based on recent research, with both ME and POTS as diagnoses I'm expecting that I do have some sort of autoantibodies type problems.

Whether this also causes the paralysis/movement difficulties I have no idea.

I tend more towards a belief in Occam's razor- it's unlikely that I have unconnected conditions. Rather than Hickam's Dictum : "Patients can have as many diseases as they damn well please"

It also feels connected to (though probably not) POTS itself:

• When I asked around the people with almost identical experiences tended to have POTS (often with ME)
• The first paralysis >POTS flare, 2nd paralysis >dramatic POTS improvement
• Legs issues improved when I started treating POTS with beta blockers and balanced electrolytes
• Talking to Periodic Paralysis patients they knew of POTS comorbidity

 

[Jenny TipsforME]

Does anyone know which autoantibodies (apart from myasthenia gravis) are likely to cause muscle weakness/difficulty moving?

 

[Lindberg]

@Lindberg the neurologist tested me for MG and the general ANA. I was negative on both of those, which I suspect would put a NHS doctor off testing any further. I've heard that ANA is unreliable though. People are quite often negative but do have verifiable autoimmune disorders.

Based on recent research, with both ME and POTS as diagnoses I'm expecting that I do have some sort of autoantibodies type problems.

Whether this also causes the paralysis/movement difficulties I have no idea.

I tend more towards a belief in Occam's razor- it's unlikely that I have unconnected conditions. Rather than Hickam's Dictum : "Patients can have as many diseases as they damn well please"

It also feels connected to (though probably not) POTS itself:

• When I asked around the people with almost identical experiences tended to have POTS (often with ME)
• The first paralysis >POTS flare, 2nd paralysis >dramatic POTS improvement
• Legs issues improved when I started treating POTS with beta blockers and balanced electrolytes
• Talking to Periodic Paralysis patients they knew of POTS comorbidity

@Jenny TipsforME, I have come to learn that some people get a seronegative MG diagnosis if they show problems at the RNS, repetitive nerve stimulation, and if they respond well to medication. But then one needs to meet a doctor that would like to examine further if the test is seronegative.

You haven't been tested for LEMS? There is also another autoantibody connected to MG, besides acetylcholine and Musk, and it is not always tested for; LRP4.

I like the Hickam's Dictum - it fits well with a lot of us! I heard one doctor describing his patients condition as an autoimmun storm, perhaps that's what is going on with many of us but we just don't have the proper testing for it yet?