How to diagnose MG?
 

Hello,
I am a new member on the forum. My father was diagnosed with ALS last year, but there are some symptoms which do not comply with the diagnosis. It looks more like MG - for example. double vision, which never happens with ALS patients. The doctors made a blood test to detect some antibodies typical for MG. They did not find too many of them and ruled out MG. I have heard there are other ways to diagnose MG, and sometimes, even though blood test is negative, it is still MG.

Has anybody heard of alternative ways to diagnose MG?
Thank you,
AlexM

Hi Alex,

Welcome to the community.

MG is normally diagnosed with the antibody tests. There are two that are commonly tested for now, achr (acetylcholine receptor) and musk antibodies. Although, being negative for the antibodies does not rule out MG, being positive for them pegs the diagnosis. They can also do EMG and single fibre EMG tests. They used to do tensilon testing, but as I understand it this is no longer being done as much as it once was.

Do a search for Myasthenia Gravis +diagnosis and you'll get a ton of information.

Cheers,

Brian.

Hi, Alex. Welcome.

I'm sorry your Father is going through so much. Would you mind telling me - what do you mean by "They did not find too many of them . . ." ? Did he have some antibody numbers? Do you know what they are and the reference ranges? And was he on any meds at that time that would make those antibody tests look more normal, like steroids or other immunosuppressants or Mestinon? If he had any MG antibodies above the normal range, then chances are he has MG!!!

Also, if your Father has an IgG (subclass 1 - 4) deficiency, it can also make the antibody tests look normal. With celiac disease, an IgA deficiency will make those antibody tests look normal. Make sense?

Brian pretty much covered the tests. They can also do a repetitive nerve stimulation test and a Tensilon test.

Has your Father seen a neuro-ophthalmologist? They can do tests that determine if it's MG or ALS or something else.

When there is a diagnosis in question and MG is one of the possibilities, most knowledgeable neurologists (MG experts) will do plasmapheresis. It makes MG better but not ALS. They could also try IVIG but it's usually the plasma they try first.

Has your Father had pulmonary function testing, specifically MIP & MEP? Those test for neuromuscular weakness. ALS may be constant while in MG, those numbers tend to keep going down on each successive try.

Also, an arterial blood gas, combined with a clinical exam and an oximetry reading would be useful.

Have they done a muscle biopsy? It should be done at or sent to a reputable lab like the Mayo Clinic or Johns Hopkins.

Has your Father seen any MG experts or ALS experts? That is the MOST important thing that could be done. You could always ask that his records be transferred to an expert for review, even if your Father can't go see one. Where is your Father?

I wish there was more I could tell you. If you have any more questions, please ask! This group is great at helping out. I really hope you can figure out what is going on with your Father. A true expert would be able to tell the difference between ALS and MG.

Annie

Hi Alex and :welcome_sign:

We are glad you joined us. There are other tests performed to diagnose MG besides the blood test. The blood test is not the only definite source to get a dx. Some people actually test neg for the bloodwork and positive in other ways.

The neurologist most of the time will start with an "in office" physical exam. My neuro did all kinds of testing with a light to test my double vision. Also she observed my ptosis (eyelid drooping) as well. When I looked up for a short while, the eyelids are not strong enough to stay open which indicates muscle weakness there. Also she tested my strength in my arms, legs, jaw, and neck. She also ask me to close my eyelids as hard as I could and not to let her force them open.....didn't work as she could force them open every time....Later she put a cold compress on my eyes for a few minutes and like magic.....my eyelids were stronger and I had more strength to keep her from forcing them open.

There are other tests as well. I had the repetitive nerve stimulation. She attached electrodes to my nerve sites all over my body and recording the nerve impulses sent to my muscles..
She also performed a single fiber EMG. This one was a good bit painful. She inserted a small needle in my muscles at different time all over my body.

For me, I tested positive to the bloodwork, and both tests above so it was pretty cut and dry for a dx. But I do know that every person is different, and if you don't get the answers you need, be your own health advocate and go get other opinions. MG is extremely hard to dx.

We are glad you are here so keep us up to date on your dad's progress.

Take care
JJ:winky:

Alex also Annie is right on. You might want to go to www.myasthenia.org which is a wonderful source of information for you. They also recommend a neuro muscular specialist if a dx is hard to tell vs. a neurologist..

JJ

Hi Alex and welcome,

so sorry to hear about your Dad.
I have nothing to add to the already great answers above, hope you get some of you questions answered so you Dad can get the help he needs
take care
Kate

Alex,

Welcome to the best place to find answers and support for MG. Annie is always the best with technical answers and I always take her advice. For some reason many Dr.s say no about MG {I think it is because they are afraid of it} I was blessed when I was DXed because I had "The MG Expert" of that time {since retired} If you suspect MG then you fight for it as MG is bad but much better than ALS. Don't give up and remember this crew is the best and most supportive group of people I have ever come across!

Alex,
I was diagnosed in Nov.08 I am seronegative but was diagnosed on the basis of
1) neurological exam
2) thorough history of symptoms
3) positive single fibre EMG
4) response to Mestinon
I hope that your dad gets some answers.
Melanie

Hello everybody,
Thank you very much for your answers and the welcoming words. Probably, I should explain my situation in more details. My father is in Russia, I am in Canada. That is why he cannot always act like people here - the medical system works differently there.
I write to ALS forum and now to your forum and translate the answers and recommendations to my mom. There is nothing like these forums in Russian. That is why your support and advice are so valuable for us - they are the only source of reliable and honest information for us.
I will translate your answers to my mom and ask her about the details I do not remember (like antibody numbers and if Mestanin test was done to my dad).
Unfortunately, he cannot already move, talk and eat (he got PEG) - maybe, it is too late for the diagnosis now. But we want to find out the truth and help him as much as we can...

How to diagnose MG?
 

Thank you, everybody for your answers and support. Since we live in different countries with my parents (they are in Russia, I am in Canada), I do not know if they can do the same medical examination as people here. I will translate your answers to my mom and we will have to figure out what is available in Russia.
Thank you again,
Alex

That's really interesting, Annie...I didn't think about the fact that if there is a immunoglobulin deficiency, it might make a person look seronegative...

I know that for me, my antibody levels were pretty low relative to the picture of MG I have...Mine were only 2.88 nmol...I've read that some people's can be as high as 800, so I was pretty surprised...I also had a thymoma, though, and I read that with a thymoma, the levels tend to be positive, but on the lower end...I wonder if that has to do with the IgA levels, especially considering the fact that lots of people with thymoma have common immune deficiency...Interesting...

But yeah, I totally agree...Was your dad positive on the achr test, but a 'low' positive, Alex? It would be very unusual for him to be positive on this test and not have MG -if he has the symptoms of MG, which he has...There have been people with ALS who've tested low-positive for anti-achr, but it's very, very unusual, and prolly would indicate that they had both problems...

I just wanted to add that antibody levels >0.5 for anti achr is considered positive...Also, men tend to have lower antibody levels than women, not sure why....

With Acetylcholine Antibodies, it's the IgG's (subclasses 1 - 4). Just to clarify!

It's IgA with Celiac.

Hi Alex,

Welcome! I'm so glad you decided to check this site out and got here! As I mentioned to you previously, there are lots of people here who really hand out good advice with regards to diagnosing MG and also other issues. Do keep us updated, I was wondering when you would come in here. =)

*Hugs*

connie from als forum

hi Alex
 

welcome to the forum.

Does your dad have ptosis at all. Many countries around the world use the ice test as a way to diagnose MG.
Basically they apply ice to the ptosis (droopy / closed eyelid or eyebrow) if it resolves its a positive for MG.

Also has your dad had a Tensilon test or had a Neostigmine injection. Positive responses to these are also used to diagnose MG.

I really hope that your dad gets some proper help soon.

Kind regards
Rach