[Whitecap]

Hello everyone, I'm hoping Annie or some of the other knowledgeable folks will share your thoughts.

In 2008 I was diagnosed with ocular MG. I don't have any idea what test were done at that time but i do know the results were negative for MG. It took about a year for my vision to return to normal but it eventually did.

About a year and a half ago I started having issues with very sore and tired muscles and any time I did manual work with my upper body or even walking any longer distances I would have pain in my back between my shoulder blade and my spine as well as in my upper chest area and I would find it hard to catch my breath, If I rested for a few minutes the pain would subside and my breathing would return to normal.

I finally got in to see a neurologist recently and he tested for B-12 and ran an ACHR test. My B-12 level was at 166 and I was put on B-12 shots, once a day for seven days than once a week for three weeks and now once a month. I have completed five weeks now, but feel after about the first two weeks of treatment I really haven't felt any additional change.

My ACHR result was a 13, according to the Dr. this is negative for MG.
If i understood the Dr correctly, he has no plans on doing further testing, says that the drugs for MG only work for the ACHR type?

The Dr also had me do a breathing test that i feel was worthless, I sat in a chair and gave three exhales into a tube, that was it. I told him my breathing issues where when i was actively working but I don't think he listened.

My main questions are, I cant really say that i have muscle weakness, my muscles get sore and what I would call tired but i am still so far able to do pretty physical work, can this still be MG? and should I have additional test done and if so, what test. and yes i still have the shortness of breath.
Also how long should it take for the B-12 shots to really take effect, when should I let the Dr know things aren't working enough?

Any help or advise is much appreciated.

[kiwi33]

Hi Whitecap

Welcome to NeuroTalk.

My understanding, as an immunologist, is that an ACHR antibody titre of 13 is in the range for Class IIA MG.

You might find the information in these two links helpful if you would like to discuss this with your doctor:

http://emedicine.medscape.com/article/1171206-workup
http://emedicine.medscape.com/article/1171206-overview

All the best.

[suev]

Hi Whitecap - welcome to the forum

My neuro had me go with sublingual B12 every day for maintenance (2500 mcg). Make sure you use the methyl - not the cyano - compound. Better uptake in the body.

Have you considered seeing another neuro for a second opinion? Many of us have had to get numerous opinions from various specialists before arriving at a dx (and unfortuantely some are still searching).

The most frequent other specialties considered / consulted are rheumatology. endocrinology, and pulmonology.

Perhaps you might wish to consider a pulmonologist first. Muscles need oxygen - and if you are not exchanging oxygen efficiently - then you might experience muscle issues as well as the shortness of breath.

Just a thought. Good luck in your search.

[AnnieB3]

Hi, Whitecap. I'm fending off a MG crisis right now, but I wanted to say a few things.

You don't need the shots, but you do need to have methylcobalamin B12 every single day, probably for the rest of your life. Two 5 mg. tablets twice a day to start, then one 5 mg. twice a day after a few months. It takes as long to recover from a B12 deficiency as you've had it. You're on fumes of B12! Mine was 101 at diagnosis.

I like the Jarrow brand, which you can get on Amazon. You need B12 for every single cell in your body. Some of your symptoms might be from the deficiency, but I doubt that all of them are. Please get some B12 and take control over your health! The body can't do without B12!!

Did your doctors even attempt to figure out WHY you are deficient? Celiac disease, pernicious anemia, overuse of antacids, and a lack of stomach acid are the top causes. Did they check your parietal cell or intrinsic factor antibodies?

That Medscape chart of AChR antibodies is only showing the "mean" antibody level for those classifications, not the range of what is positive on a lab result.

0.0 to 0.02 is negative for the AChR BINDING antibody. If what you are referring to is the binding result, then you have a positive MG test! Can't your doctor read? Or was he referring to the AChR MODULATING test?

http://www.mayomedicallaboratories.c...erpretive/8338

Look at your test results or get them if you don't have them!

Ditto on what Sue said: Get a second opinion from a MG expert if you can.

A neurologist isn't a pulmonologist. Those stupid handheld breathing tests are not as accurate as formal breathing tests! Find a pulmonologist and have thorough breathing tests done. They need to do MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure), which are specific to neuromuscular disease. Also, make sure they give you ALL of the results and not only the highest one. Why? Because trends in those tests are important for MGers. If the numbers keep getting lower, chances are you are not doing well, because MG gets worse with repetitive activity.

If you are so bad that you can't breathe well, can't swallow well, or can't move well (or any combo of the above), then dial 911. A MG crisis is serious and can happen quickly. It doesn't matter if you don't have a diagnosis. You have a positive test result (if it's the binding one).

I think that neuro was worthless, in my opinion. To ignore someone with your symptoms PLUS a B12 deficiency (we need B12 to make acetylcholine), is highly dangerous.

Please seek out some more help right away. I hope you'll be okay.

Annie

[Whitecap]

Kiwi33, Sue and Annie,

I want to thank you for your replies and help.

I don't really have much additional information at this time but I did call the Dr. office and talked with his assistant. I'm not real impressed with there responses to my questions but I suppose I shouldn't have expected much.

When I asked about finding out what caused the B-12 deficiency all they said was that there are many different things that cause this and the reason why really doesn't matter.

As too the breathing test, they said they tested to see how much air I was exhaling and taking in but so far have not given me the results and said this was all that needed to be done.

As to the MG test results, they said they did a musk test and this came back negative for MG. the result I mentioned earlier of 13 was the Modulating result, no other information was given.

I asked to get a copy of my medical records however i have to sign a release form and there location is 130 or so miles away so this will have to be done later.

I have another question though? when I was in his office he mentioned that the results were negative for MG but that there was still a chance that i could have "negative MG" any idea what this is?

Any additional thoughts or information would definitely be appreciated.

[rockenmama]

Originally Posted by Whitecap

Kiwi33, Sue and Annie,

I want to thank you for your replies and help.

I don't really have much additional information at this time but I did call the Dr. office and talked with his assistant. I'm not real impressed with there responses to my questions but I suppose I shouldn't have expected much.

When I asked about finding out what caused the B-12 deficiency all they said was that there are many different things that cause this and the reason why really doesn't matter.

As too the breathing test, they said they tested to see how much air I was exhaling and taking in but so far have not given me the results and said this was all that needed to be done.

As to the MG test results, they said they did a musk test and this came back negative for MG. the result I mentioned earlier of 13 was the Modulating result, no other information was given.

I asked to get a copy of my medical records however i have to sign a release form and there location is 130 or so miles away so this will have to be done later.

I have another question though? when I was in his office he mentioned that the results were negative for MG but that there was still a chance that i could have "negative MG" any idea what this is?

Any additional thoughts or information would definitely be appreciated.

As far as the modulating results anything 20 and under is considered negative, HOWEVER that doesn't mean that you don't have MG and if the tests are sent to Mayo it even states that. I think he was talking about seronegative MG which is possible. I'd see about seeing another neurologist for a second opinion! Good luck!

[suev]

rockenmama is right - there are many folks who do not test positive for antibodies - - but who are diagnosed with MG. I'm one of them.

I received my diagnosis based on clinical exam and the symptoms I reported and my neuro could see. My one (and only) antibody test was negative, my EMG was neg. and my SFEMG was borderline. But I responded beautifully to a trial dose of Mestinon in the neuro office. So I got labelled as an MG patient and have been on Mestinon (generic) ever since!