Crash affecting ability to breathe

[mattytoo]

Can you remind me, have you done muscle testing (EMG or nerve conduction testing) and have you been tested for paraneoplastic autoantibodies?

the neurologist wouldn't do any of the other antibody tests (I was negative for AChR and MuSK) despite me asking - which is frustrating because I suspect I might have the LEMS antibodies given that it started with generalised weakness & fatigue for years before it progressed to this. He also said no to all muscle/nerve tests except for single fibre EMG, which is months away with wait lists. I'm going to ask the cfs doctor if he'll order the antibody tests though, he may be more open to my suggestions. and I can take those to a different neuro because this one sucks!

 

[rel8ted]

I tend to agree with you that you have some kind of myasthenic syndrome. I also believe that there are myasthenic syndromes that are not yet named by modern science/medicine (beyond MG and LEMS). Can you remind me, have you done muscle testing (EMG or nerve conduction testing) and have you been tested for paraneoplastic autoantibodies?

@mattytoo I have heard of Mestinon being used in some form of dysautonomia (can't remember which one, though). Also curious about what antibodies you have been tested for and if you are having SFEMG.

I'm basically in the same boat as you. I've got a new neuro that believes I either have MG or LEMS. She has done comprehensive blood work & we are still waiting on some of the results. Had the wonderful pleasure of having an EMG that was normal & she was so disappointed. She said she really did hope that it would be abnormal so we didn't need to do SFEMG, but now we do. She said my ptosis and the response to the ice test are "very compelling" & she is very enthusiastic about getting some answers including a full autonomic workup. I did a previous unconvincing trail of Mestinon, but had severe digestive issues to to IBD/undiagnosed Celiac, so it is in question if I was even able to absorb the medication at the time.

Hope you get some answers soon!

 

[mattytoo]

@rel8ted
I think the mestinon worked for some POTS people, but I can't find the info about it..

Also curious about what antibodies you have been tested for and if you are having SFEMG.

I've only been tested for AChR (binding) and MuSK antibodies, but I want to get tested for the following antibodies:
- N Type Calcium Channel
- P/Q-Type Calcium Channel
- AChR blocking & modulating
- LRP4

as far as I understand, these are the only antibodies related to mg/lems identified so far. I'm unsure if LRP4 is available in Australia, I think it's still fairly new.

The sfemg is a whole 'nother kettle of worms, the neuro said he'd order it but I called this week to confirm & there's no evidence he ever wrote a referral for it in my file. He claims that's because he "hand delivered it" to the hospital but I'm very doubtful

she is very enthusiastic about getting some answers including a full autonomic workup.

I'm so glad your neuro is being thorough!! I also hope you get some answers soon. well do I know how frustrating constant negative test results are!!

I also had a positive response to the ice pack test, but of course my neuro dismissed the photos

Unfortunately... I didn't exactly get the mestinon from a doctor (I know it was very dangerous and reckless but I did as much research as I could and I was/am so desperate I couldn't breathe or swallow & right now it's keeping me out of the hospital), so I have to be careful how I bring it up.

I saw my gp yesterday & was hoping she'd be helpful but... I got the dreaded "I won't keep referring you for tests and specialists, if you test too many things you'll end up with false positives" speech so I think I need to go doctor shopping again argh

anyway my current plan is push the mecfs specialist to test the antibodies I listed and I'll test the waters about mentioning the mestinon. I see him on wednesday. fingers crossed for at least one supportive doctor

 

[rel8ted]

as far as I understand, these are the only antibodies related to mg/lems identified so far. I'm unsure if LRP4 is available in Australia, I think it's still fairly new.

You might want to join the seronegative MG FB group. There are more antibodies. There are a lot of good resources in the file section there as well.

I also had a positive response to the ice pack test, but of course my neuro dismissed the photos

That is indicitave of ocular MG & in my case, it’s so convincing that it’s the reason for my new neuro being so thorough. She’s not thrilled about my voice or swallowing now either.


Just remember, they all have their box to work within. It’s rare to find any one doc to look at the whole picture. We just overwhelm them sometimes. Then they say we can’t be that sick & are faking.

 

[Gingergrrl]

I've only been tested for AChR (binding) and MuSK antibodies, but I want to get tested for the following antibodies:
- N Type Calcium Channel
- P/Q-Type Calcium Channel
- AChR blocking & modulating
- LRP4

This sounds like an excellent plan. I just Googled "LRP4" and am not sure if I have ever had that test? Is it specifically for Myasthenia Gravis? Would it be part of a panel for MG & MuSK autoantibodies or separate?

I also had a positive response to the ice pack test, but of course my neuro dismissed the photos

I am not familiar with the ice pack test but assume this is b/c I have never had ocular symptoms and was negative on the MG and MuSK panels (vs. the LEMS autoantibody).

Unfortunately... I didn't exactly get the mestinon from a doctor (I know it was very dangerous and reckless but I did as much research as I could and I was/am so desperate I couldn't breathe or swallow & right now it's keeping me out of the hospital), so I have to be careful how I bring it up.

I'm not sure how it works where you are but here everything is so fragmented that I could easily say that a prior doctor had me try Mestinon and no one would even question it (since in the past, I had consults with multiple cardios, neuros, etc, before we figured out what was going on and I cannot even count the number of things that I tried that did not work).

I saw my gp yesterday & was hoping she'd be helpful but... I got the dreaded "I won't keep referring you for tests and specialists, if you test too many things you'll end up with false positives"

This has never made sense to me and a blood test is either positive or negative and the probability does not change based on the number of other tests that you have had! When I was anemic, I was anemic and when I wasn't, I wasn't. And this pertained to every other test that I have done as well.

You might want to join the seronegative MG FB group. There are more antibodies. There are a lot of good resources in the file section there as well.

That is great that there is a seronegative MG FB group. There is also a LEMS group (and many are seronegative) and there is also a group for people with the calcium channel/ LEMS autoantibody but who have been given every diagnosis under the sun (including ME/CFS) and are trying to figure out what is really going on (in their own case).

 

[mattytoo]

thanks for the heads up about the facebook groups! I don't have an account there anymore but I might get my mum to join them so I can peruse all their resources haha

I just Googled "LRP4" and am not sure if I have ever had that test? Is it specifically for Myasthenia Gravis? Would it be part of a panel for MG & MuSK autoantibodies or separate?

It's for MG, if you're seronegative for AChR & MuSK
"Anti-LRP4 antibodies are found in approximately 9.2% (range 2% to 50%) of MG patients who are negative for both anti-AChR and anti-MuSK" (from https://www.athenadiagnostics.com/view-full-catalog/l/lrp4-autoantibody-test)

I don't think it's been around long enough for many places to offer it

 

[Gingergrrl]

thanks for the heads up about the facebook groups! I don't have an account there anymore but I might get my mum to join them so I can peruse all their resources haha

It might be worth it and some of the private medical groups have extremely helpful info.

It's for MG, if you're seronegative for AChR & MuSK
"Anti-LRP4 antibodies are found in approximately 9.2% (range 2% to 50%) of MG patients who are negative for both anti-AChR and anti-MuSK" (from https://www.athenadiagnostics.com/view-full-catalog/l/lrp4-autoantibody-test)

Thanks and I had not heard of that test before.