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Temporary paralysis I need your Insights

Gingergrrl

Senior Member
Messages
16,171
Does anyone know which autoantibodies (apart from myasthenia gravis) are likely to cause muscle weakness/difficulty moving?

Jenny, I apologize if I have already mentioned all of this and not able to go back through the thread right now. Have you contacted Dr. Angela Vincent's lab in the UK? I am not certain if she is retired or still doing testing but she is the auto-antibody guru that I would consult with of anyone in the world if given the opportunity. I tried contacting her lab from the US a while back but never got a reply.

I would test for the VGCC and VGKC (voltage gated calcium and potassium auto-abs) and I know that Mayo Clinic does these tests and hoping you can get your Neuro to send blood from the UK. It might be useful to do the Cell Trend test from Germany to see if you have the beta adrenergic auto-abs (for POTS) or the anti-muscarnic/cholinergic abs but many docs consider these experimental (vs. the calcium & potassium ones are established tests that would be taken more seriously).

I still wonder if you have the periodic paralysis disorder (from the potassium ab)? The panel I did from Mayo was called "PAVAL" for paraneoplastic autoantibodies. Thanks for keeping us posted and sorry it is so difficult with all the Neuros (and this appears to be universal)!
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
@Gingergrrl Angela Vincent doesn't seem to have convincingly retired. She's doing something in between https://www.ndcn.ox.ac.uk/team/angela-vincent and has published this year https://insights.ovid.com/crossref?an=00019052-201706000-00017

Whether she'd see me as a patient is another question. Does an honorary consultant take referrals? I think this means she's working for free so I doubt she has normal patients :thumbdown:

I wish I'd asked more about the reasoning behind him thinking I didn't have Periodic Paralysis. I was too blinded by the good doctor-patient dynamic to challenge his conclusions (which is an interesting thing in itself). I think it was something about my experience of it rather than the tests. Possibly that he seemed to pin point that my issue with movement isn't weakness but stiffness/rigidity (not colloquial meaning of stiffness, but inability to move, which actually doesn't fit with the previous neuro finding proximal weakness). I have also seen on a YouTube video someone with PP being moved into place like I was in paralysis and another video showing the same person having similar walking issues as me on a localised problem day.

Thanks for the ideas on tests. I might see about getting those done and then following up with a private doctor if it uncovers something. I have a GP appointment tomorrow and I've also contacted the neuro' secretary to see if I can get back on his list without a new referral process. You can tell how slow our system is though. This thread started last May. If it's just about being patient I don't mind so much but it is possible for somewhat treatable conditions to become irreversible if left untreated :nervous:
 

Gingergrrl

Senior Member
Messages
16,171
Whether she'd see me as a patient is another question. Does an honorary consultant take referrals? I think this means she's working for free so I doubt she has normal patients :thumbdown:

I'm not sure how it works but if there is a way to see her (or for your doctor to discuss your case with her?), I would do anything possible to make that happen.

Possibly that he seemed to pin point that my issue with movement isn't weakness but stiffness/rigidity

In hearing about the stiffness/rigidity part, I would also get tested for anti GAD65 which is the auto-antibody that correlates with SPS (Stiff Person Syndrome). It's a long shot but could be valuable info. Do you ever get the muscle reactions after being startled by a noise?

Oxford is I think the place to get autoantibodies tested in U.K.

I would agree with Oxford, too.

Voltage gated Ca2+ channel (anti-VGCC; RIA) IgG

This test is very vague b/c there are several VGCC channels (the test I did at Mayo included the N-type, the L-type, and the P/Q type if I remember correctly) and I was positive for the N-type. The test above is better than nothing but won't tell you which calcium or potassium channel has the auto-antibodies and each one correlates with different illnesses.

I know how challenging it is to get this kind of testing in the U.K. and I have to say I am very impressed and proud of you for not giving up. You know something is not right and you are not giving up until you find out (I can tell) and good for you! :thumbsup:
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Today I went to see the doctor who visited me at home previously on this thread. He had a student doctor in with him, I've no idea what she made of it all.

He wants me to give midodrine more of a go (I think I've established that it was coincidence back in January that starting this was related to an episode of paralysis and much worse walking). I'm still a little apprehensive though.

He's going to write to the neurologist who I shouldn't have been discharged from, but best case scenario is it will take months to get an appointment on the NHS.

So we discussed going private and neurology vs immunology. He thinks I should continue on the neurologist tack. I'm thinking that once I go private though I should be able to get a neurologist to authorise getting some more autoantibodies tested, right? It was the neurologist who tested for myasthenia gravis antibodies before.

I'm also going to get an Occupational Therapist visit to suggest ideas for coping at home.
 
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Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
@Gingergrrl a question my GP asked is which of those autoantibodies has been shown to be linked to episodes of paralysis? He couldn't think off hand and neither could I. I started talking about electrolytes. By which I meant to say possibly the voltage gated channels but I couldn't bring the right words to mind...
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
"Neurological channelopathies are frequently genetically determined but may also be acquired through autoimmune mechanisms. All of these autoimmune conditions can arise as paraneoplastic syndromes or independent from malignancies. The pathogenicity of autoantibodies to ion channels has been demonstrated in most of these conditions, and patients may respond well to immunotherapies that reduce the levels of the pathogenic autoantibodies. Autoimmune channelopathies may have a good prognosis, especially if diagnosed and treated early, and if they are non-paraneoplastic." from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3151600/

What I'm unsure of though is when the neuromuscular specialist ruled out Periodic Paralysis was he ruling out channelopathy? I'm not sure how he'd have the information for that? Would the nerve conduction study have shown abnormalities if that was the issue instead of the EMG? (i.e. the other way around from my test results)
 
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MEMum

Senior Member
Messages
440
Prof Vincent is not a clinician, but a science researcher. She said this in London.
I talked to her after she spoke on receptor antibodies at the IiME conference a few years ago. I was asking about my daughter, who had been shown to have autoantibodies to the pyruvate kinase receptors in the basal ganglia (processed in Oxford). The results had come back from the lab saying she should be tested for anti NMDA receptor autoantibodies.
This was done and she did not have anti NMDA receptor antibodies. I was asking Prof Vincent what other auto antibodies we should test for. She noted my daughters details and said that she would see if there was any blood left and look into it. Dr Bansal then sent some more blood for testing, but this, for some reason, got forwarded to the National Neurological Hsp, and was lost in transit. To be honest I think Dr Bansal thought I was mad to even hope that this would be followed up.
 
Messages
36
What I'm unsure of though is when the neuromuscular specialist ruled out Periodic Paralysis was he ruling out channelopathy? I'm not sure how he'd have the information for that? Would the nerve conduction study have shown abnormalities if that was the issue instead of the EMG? (i.e. the other way around from my test results)

It should be an exercise test measured by CMAP (Compound Muscle Action Potential) instead of a regular EMG in order to find channelopathy. From what I understand this can be done through RNS, repetitive nerve stimulation. Was that the kind of test you had?

I had a regular EMG which didn't show anything but after the nerve conduction study my foot became weak and flaccid. Unfortunately, they didn't do RNS and CMAP because that was not something they normally did...
 

MEMum

Senior Member
Messages
440
Hi @Jenny TipsforME
Sorry you are feeling so "rough".
We saw Dr Bansal privately under a work related insurance policy.
He decided to test for ABG (anti basal ganglia) receptor antibodies as she regularly had a high ASO (antistreptolysin O) titre. These are a measure of ongoing strep infection.
PANDAS is associated with post strep auto antibodies to basal ganglia receptors. (She had no motor tics, that are common in PANDAS, but severe cognitive impairment)
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
repetitive nerve stimulation.
I had a nerve conduction study before the EMG. The neurophysiologist did some repetitive thing to test for myasthenia gravis, which he said was ok. I was surprised because it seemed really short and not particularly repetitive. I agree that from what I've read you'd expect the channelopathy test to be more involved. I didn't do the cooling test and I didn't do any exercise tests over 5 minutes (though it is perhaps likely he assessed I couldn't do exercise for 5 minutes)

Eg https://www.uclh.nhs.uk/PandV/PIL/P...europhysiology for muscle channelopathies.pdf


Sorry you are feeling so "rough".

I actually don't feel that rough, or not compared to bad ME anyway. Part of my frustration is I feel like my ME is doing relatively well but I'm really limited physically by whatever else is going on.

Do you think Dr Bansal would be a good person to see? Send me a direct message if you feel more comfortable.
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl a question my GP asked is which of those autoantibodies has been shown to be linked to episodes of paralysis? He couldn't think off hand and neither could I. I started talking about electrolytes. By which I meant to say possibly the voltage gated channels but I couldn't bring the right words to mind...

Jenny, my understanding is that the blood test you would want for periodic episodes of paralysis is the voltage gated potassium channel (not the calcium channel). If @anciendaze is still around, he is an expert on this issue. I test positive for the calcium auto-antibodies and I have muscle weakness in the upper body (diaphragm, arms, even neck) but I have never had an episode of paralysis.

"Neurological channelopathies are frequently genetically determined but may also be acquired through autoimmune mechanisms. All of these autoimmune conditions can arise as paraneoplastic syndromes or independent from malignancies. The pathogenicity of autoantibodies to ion channels has been demonstrated in most of these conditions, and patients may respond well to immunotherapies that reduce the levels of the pathogenic autoantibodies. Autoimmune channelopathies may have a good prognosis, especially if diagnosed and treated early, and if they are non-paraneoplastic." from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3151600/

Jenny, thank you and I just bookmarked this and it is a very good description. We believe my auto-antibodies are not genetic (since I was healthy until my early 40's) and started viral and then shifted into autoimmunity. So far there is no malignancy/cancer in my case so I have a paraneoplastic autoantibody in the absence of cancer. I have responded extremely well to high dose IVIG and it's too early to know if I will be a responder to Rituximab but I agree that these are the best therapy options (if you indeed have these auto-antibodies and I hope you can get tested).

Prof Vincent is not a clinician, but a science researcher. She said this in London.

I knew she was not a clinician but I was unclear if she was still taking and analyzing blood samples (and consulting with the patient's doctor re: what she discovered). My doctor had said if I figure out a way to reach her and send blood, he would love to discuss my case with her but I never was able to successfully reach her and I tried a few different ways.

To be honest I think Dr Bansal thought I was mad to even hope that this would be followed up.

Well, he should not think that you are mad and I am so sorry to hear this. You are an amazing mom and advocate for your daughter and I hope that you can get the auto-antibody testing for her that she needs.
 
Messages
36
I agree that from what I've read you'd expect the channelopathy test to be more involved. I didn't do the cooling test and I didn't do any exercise tests over 5 minutes (though it is perhaps likely he assessed I couldn't do exercise for 5 minutes)

I guess one needs to meet the right person in order to get a thorough testing. It's frustrating to say the least. It takes quite some time before one finally gets tested and then it's not done like the experts says it should be done... Anyhow, I hope you will get some answers one way or another!
 

anciendaze

Senior Member
Messages
1,841
@Gingergrrl, I am somewhat still around, just not very active on the forum this year.

@Jenny TipsforME
Your experience is unfortunately not unusual. I'm going to include an excerpt from an exchange with a definite HKPP patient who went decades waiting for correct diagnosis.
> /If you don't rule out such ordinary problems how on Earth can you
> diagnose something like a channelopathy? /
Exactly. Even the researchers and advanced diagnosticians do not behave
in a satisfactory way.

The reason they have trouble is sad but straightforward. They're
imbeciles and don't read. They also don't look for or follow the key
flowcharts -- not even the main diagnosticians.

They seem to just follow a "seat-of-the-pants" method, at least, for me.

In my case, I think my documented anesthesia history, arrhythmia records
and other autonomic responses made it "obvious" to them that I had PP.
When I wanted them to give me the CMAP test (which is one of the more
definitive tests), I was told that it was a tedious test that would take
him all afternoon and he didn't want to do it -- and he said it was
obvious to him that I had PP anyway. I was not pleased...
A person can also add TTKG, since the TTKG test helps determine if there
is a loss of potassium or a shift, or they could add CMAP.
At the moment I don't have all the history of your medical encounters clear in my mind. I backed away when doctors seemed to agree you had a definite physiological problem, which I assumed they would follow up. This is the point where diagnostic flowcharts can come into play because this is no longer a merely case of "patient says something is wrong, but doctor blames patient". You then run into the problem of which authorities a given doctor will accept as competent and relevant.

I wish I had some magic to solve such impasses, I could use it myself, though my problem is different.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
The first paralysis >POTS flare, 2nd paralysis >dramatic POTS improvement

THAT... has got to be characteristic of something specific. I've got a great ANS article compilation text, Jenny, I'll see if I can't find this.

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

Muscarinic cholinergic?
In ME/CFS: https://www.ncbi.nlm.nih.gov/pubmed/12851722 and https://www.ncbi.nlm.nih.gov/pubmed/26399744
In Sjorgen's: https://www.ncbi.nlm.nih.gov/pubmed/21371688
In Chagas disease: http://www.internationaljournalofcardiology.com/article/S0167-5273(13)01994-3/fulltext
In "Chagasic dysautonomia" : https://www.ncbi.nlm.nih.gov/pubmed/11270349
In HIV: https://www.ncbi.nlm.nih.gov/pubmed/8347773

There's actually quite a bit more on that in ME/CFS.

I don't know if it's associated with difficulty moving... but here is a handy-dandy chart of potential culprits:

fgene-04-00181-t001.jpg


And here is the article that's from, which has a great deal more information:
http://journal.frontiersin.org/article/10.3389/fgene.2013.00181/full

Still, I'll check that book when I get to work tomorrow. I sensibly left it there, thinking that's where I'd need it. :rolleyes: