Myasthenia gravis or cfs

[Gingergrrl]

Yes, absolutely but I don't know what the protocol as the arrangements to send my blood sample to Oxford Uni in the U.K. was all handled by my tertiary hospitals' Pathology Dept.

I'm hoping they figure out the protocol so you can get the tests done.

Most of the literature just mentions the link to small cell lung cancer but the VGCC Ab's can be linked to any lung cancer and wide variety of other cancers including breast cancer.

This is very true and while the biggest links are to LEMS and small cell lung cancer (SCLC), the VGCC CA+ Abs can link to any cancer. I get the lung cat scans but unless you have a full body scan, you could easily miss something. But you can also have paraneoplastic autoantibodies and never get cancer. At this point, having the autoantibody and my mom dying of cancer, I almost just assume it is my fate (in the future).

As with my cancer comment here, this is a major failing in medicine where doctors will easily dismiss you when they don't find the more common symptoms as repeated in the literature.

Agreed.

 

[outdamnspot]

I'm in Aus. A GP I saw ordered a test for MG because she noticed my voice was very hoarse (which I thought was quite observant; no other doctor had really cared about that symptom). It isn't covered by medicare though and costs $130. She said unless I'm getting bad double vision -- which I'm not -- the test isn't vital to get done

 

[rel8ted]

A voice resembling Donald Duck`s is one clinical feature of MG.
I learned it at medical school too.[/QUOTE

Ah, ok.



As with my cancer comment here, this is a major failing in medicine where doctors will easily dismiss you when they don't find the more common symptoms as repeated in the literature.

Exactly my point. I was dismissed because I didn't show 1 common symptom and was referred by a female optometrist. The neuro I saw was actually very impressed that she payed enough attention to the ocular symptom and performed the ice test in her office and wrote a very thorough referral explaining all of this. I get that nobody goes to med school to be poor, but I'm noticing less and less compassion all the time.

 

[Gingergrrl]

Exactly my point. I was dismissed because I didn't show 1 common symptom and was referred by a female optometrist.

I think "female" being one of the keys words here (sadly).

The neuro I saw was actually very impressed that she payed enough attention to the ocular symptom and performed the ice test in her office and wrote a very thorough referral explaining all of this.

That is great and I saw three Neuros (all horrible, but one especially mean-spirited and cruel). I have given up that I will ever find a Neuro who is interested in my case or able to help me.

I get that nobody goes to med school to be poor, but I'm noticing less and less compassion all the time.

It's very sad but true. I have two amazing doctors (neither are Neuros) and I feel like I have won the lottery with finding them. I live in fear of the day they retire and do not know what I will do.

 

[kangaSue]

I'm in Aus. A GP I saw ordered a test for MG because she noticed my voice was very hoarse (which I thought was quite observant; no other doctor had really cared about that symptom). It isn't covered by medicare though and costs $130. She said unless I'm getting bad double vision -- which I'm not -- the test isn't vital to get done

The MuSK antibody test isn't covered by Medicare but the test for acetylcholine receptor (AChR) muscle binding antibody is covered.

As the acetylcholine receptor (AChR) muscle binding antibody is the most common one found in myasthenia gravis, it would pay to do this first before deciding if the MuSK test is then warranted.

If the MuSK test is like a VGCC Ab test and only outsourced to be done by a State run Pathology arm, you can do what I was advised to do by a doctor on the quiet - take the test request form to a public hospital Pathology Dept and chances are good that you won't get charged for it and the cost gets absorbed into the hospital's budget. I've had a number of non-Medicare funded blood tests done this way without getting billed for it.

 

[kangaSue]

I'm hoping they figure out the protocol so you can get the tests done.

I did get the test done. What I was saying is that I can't advise anyone else on how it was sent overseas as it was all handled inhouse by the hospital.

 

[outdamnspot]

The MuSK antibody test isn't covered by Medicare but the test for acetylcholine receptor (AChR) muscle binding antibody is covered.

As the acetylcholine receptor (AChR) muscle binding antibody is the most common one found in myasthenia gravis, it would pay to do this first before deciding if the MuSK test is then warranted.

If the MuSK test is like a VGCC Ab test and only outsourced to be done by a State run Pathology arm, you can do what I was advised to do by a doctor on the quiet - take the test request form to a public hospital Pathology Dept and chances are good that you won't get charged for it and the cost gets absorbed into the hospital's budget. I've had a number of non-Medicare funded blood tests done this way without getting billed for it.

Do you happen to know symptoms associated with the AChR antibody? I know the doctor who ordered the MuSK test would order the AChR antibody test, because she seemed willing to rule out anything. But transport to get to her is expensive and I've become very physically restricted lately, so I wonder if it would be worth the hassle. She implied that if I had something like MG, I would be afflicted with double-vision, especially towards the end of the day, which I've never experienced; in lieu of that, she said the test isn't really worth getting done at that cost.

 

[Gingergrrl]

Do you happen to know symptoms associated with the AChR antibody? I know the doctor who ordered the MuSK test would order the AChR antibody test, because she seemed willing to rule out anything.

I might be wrong on this and hoping @kangaSue or someone will correct me but my understanding is that some people have MG, or a myasthenia type illness, but are negative for the AChR autoantibodies but might test positive for the MuSK autoantibodies (but there would not be a great difference in symptoms). I think the MuSK group might be considered seronegative? I think sometimes people are also diagnosed by single fibre EMG or Tensilon Test, too.

 

[kangaSue]

Do you happen to know symptoms associated with the AChR antibody?

The antibodies all involve muscular weakness as I understand it and MG caused by AChR autoantibodies is characterized by fluctuating muscle weakness often starting with extraocular muscle weakness progressing in a head to foot direction.
https://onlinelibrary.wiley.com/doi/full/10.1111/joim.12163

Note that not everyone with MG has AChR autoantibodies or even extraocular muscle weakness, they are just the most common findings. As mentioned by Gingergrrl, muscle weakness can just as easily be caused by other antibodies so youcan have similar symptoms from having MuSK or VGCC Ab alone.

If you have any combination of chronic fatigue, orthostatic intolerance, thermoregulation dysfunction and sleep difficulties with it too, there's a good chance that it involves Autonomic Neuropathy as well. (A nerve conduction study is often negative with AN).

 

[outdamnspot]

The antibodies all involve muscular weakness as I understand it and MG caused by AChR autoantibodies is characterized by fluctuating muscle weakness often starting with extraocular muscle weakness progressing in a head to foot direction.
https://onlinelibrary.wiley.com/doi/full/10.1111/joim.12163

Note that not everyone with MG has AChR autoantibodies or even extraocular muscle weakness, they are just the most common findings. As mentioned by Gingergrrl, muscle weakness can just as easily be caused by other antibodies so youcan have similar symptoms from having MuSK or VGCC Ab alone.

If you have any combination of chronic fatigue, orthostatic intolerance, thermoregulation dysfunction and sleep difficulties with it too, there's a good chance that it involves Autonomic Neuropathy as well. (A nerve conduction study is often negative with AN).

I made an appointment with the doctor for two weeks time. Most of the testing done by GPs thus far has involved standard blood counts, one screening for common infections (CPn etc.) and one autoimmune panel (which came back negative). Given her open-mindedness, and the fact that my ability to get to doctors is becoming increasingly restricted, are there any other (free) more in-depth tests you'd suggest asking her for?

 

[Gingergrrl]

Given her open-mindedness, and the fact that my ability to get to doctors is becoming increasingly restricted, are there any other (free) more in-depth tests you'd suggest asking her for?

I would ask for the MuSK and VGCC (voltage gated calcium channel) autoantibodies in addition to the AChR since your doctor sounds open to this. Best wishes and keep us posted.

 

[kangaSue]

Given her open-mindedness, and the fact that my ability to get to doctors is becoming increasingly restricted, are there any other (free) more in-depth tests you'd suggest asking her for?

All the symptoms I mentioned above, as well as Autonomic Neuropathy, can be related to an autoimmune condition so an ANA panel and an ENA panel would be on my "to do" list, if not already done, to rule out a lot of more common things.

 

[outdamnspot]

All the symptoms I mentioned above, as well as Autonomic Neuropathy, can be related to an autoimmune condition so an ANA panel and an ENA panel would be on my "to do" list, if not already done, to rule out a lot of more common things.

I did have an ANA and ENA and both were negative. Can GPs here check for MCAS?

 

[kangaSue]

Can GPs here check for MCAS?

From what I've read about it, most GP's in Oz sound to be very much in the dark around MCAS. They can request a test for tryptase levels but that is only helpful if you have Mastocytosis as that's just the tip of the mast cell activation disorders.
I think you'll be hard pressed to even find a specialist here who is expert in this field.