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- - How can it be MG when all tests come back normal? (https://www.neurotalk.org/myasthenia-gravis/207101-mg-tests-normal.html)

Keep hunting, you will find one with a brain. Maybe
Mike

Quote:

Originally Posted by Denise9293 (Post 1083656)

My neurologist was at a loss but decided to try Mestinon. Symptoms have improved some but I now have twitchy eyes and muscle cramps from the med. I was told that 5% of MG patients test normal.

Denise,

Mestinon is a tricky ting. It works differently from individual to individual.

Here is the MG Manual section on Mestinon:

No fixed dosage schedule suits all patients. The need for cholinesterase inhibitors varies from day to day and during the same day. Different muscles respond differently—with any dose, some muscles get stronger, others do not change and still others become weaker. [emphasis added] The drug schedule should be titrated to produce an optimal response in muscles causing the greatest disability. . . Attempts to eliminate all weakness by increasing the dose or shortening the interval may cause overdose at the time of peak effect.

Myasthenia Gravis: A Manual for the Health Care Provider (PDF) - page 17

I downloaded and printed a copy of the MG Manual for my first neurologists. I'm seeing my new neurologist tomorrow, and he appears sharp enough not to need the manual.

Check with your prescribing neurologist, but I can tolerate 3 or 4, 60 mg Pyridostigmine (generic mestinon) tablets a day during my waking hours, one every 4 hours. Also ask your neurologist if the 180 Mestinon Timespan might be beneficial for bedtime. This is taken in addition to the normal dose. The Mestinon timespan should not be taken during the day.

While in the hospital for a recent MG Crises, they gave me a 60 mg tablet, every 4 hours around the clock for 6 days, unless I am mistaken. To be sure, I will check with my neurologist.

I only take Mestinon when I have symptoms. During my recent taper, the Stanford people had me eliminate the Mestinon. I did not need it, only having relatively mild symptoms.

I've seen three different neurologists, all trusted me to choose when and how much Mestinon to take, with in reason. Three days prior to my MG crises, already displaying severe ptosis, Dr. Dearlove at Stanford essentially said take as much Mestinon as I want to get through the return of symptoms. I took this to mean one tablet every 4 hours during my waking time, 4 to 5 tablets a day.

-Mark-

Quote:

Originally Posted by Panorama (Post 1090267)

While in the hospital for a recent MG Crises, they gave me a 60 mg tablet, every 4 hours around the clock for 6 days, unless I am mistaken. To be sure, I will check with my neurologist.symptoms. I took this to mean one tablet every 4 hours during my waking time, 4 to 5 tablets a day.

I did, in deed, get one 60 mg tablet every 4 hours around the clock for six days. If I have strong symptoms again, I will take one every 4 hours.

I asked my new neurologist what he would have done if I had seen him (instead of Stanford) on the Monday before my Thursday slip into a MG Crises. I presented severe ptosis in my left eye at that meeting, along with impaired chewing and the beginnings of speech problems. He said more Mestinon, not dose but perhaps a bit more frequent.

-Mark-

P.S.: Check with your neurologist before adjusting your Mestinon. My situation may be different than yours.

And there is this...

Quote:

Originally Posted by Denise9293 (Post 1083656)

Since December 2013, I have had extreme fatigue and muscle weakness in my limbs. Also experience trouble swallowing and shortness of breath. My neurologist was at a loss but decided to try Mestinon. Symptoms have improved some but I now have twitchy eyes and muscle cramps from the med. I was told that 5% of MG patients test normal. How can I just accept that diagnosis without proof?

When I had consult with my surgeon he mentioned hearing about another newly discovered MG implicated anti-body, but couldn't remember what it was called or if there was a test for it yet. Today I found an article from Nov 2013. Won't let me post a link here for it since I'm fairly new to the board, but here's the title if you want to search for it on*edit*

Research Uncovers New Cause for Muscle-Weakening Disease Myasthenia Gravis

Will be bringing a copy of the full journal article (link to that is in the posted article) into my next appointment with my neurologist to find out what he knows about it. If I have a supportive medical team that's not questioning the diagnosis in spite of being seronegative for AChR and MuSK, is it worth it to do another test just for curiosity sake (assuming a test is/becomes available)?

LRP4 antibody tests are not readily available, so far as I am aware.

I guess each of these tests is expensive, so it is no surprise that, with a rare disease if 80% are AChR positive 10% MuSK positive and some smaller percentage maybe LRP4 positive, then the rarer the version you have the more costly the tests will get.

If you have a medical team accepting that you are seronegative MG, the only reason that an extra test would be worthwhile would be if that particular version of MG responded to different treatments.

Reply to Annie's post

Hi Annie

I was interested to see your comments on PI Max & PE max. I am 47 & have had mild lupus for many years. In 2012, the condition seemed different in many ways but most disablingly weakness in arms, legs, torso. Aspiration at night and then most recently respiratory problems & very slight intermittent ptosis. PI max is 18.4 cms and PE Max 23 cms. 6 months ago they were 32 cms & 51 cms h20. Sniff test indicates that I have a weak diaphragm. I am anti achr negative and my SFEMG was not supportive of MG although the RNS showed 'decrement which seems a bit artefactual' which I think means operator error. I don't feel convinced that I have MG but I'm pretty sure that there is more than normal fatigability in my chest/arm muscles.

I just don't know whether or not to bash my way through the uncertain doctors or sit it out a bit longer to see if things settle or worsen. My resp doc thinks there probably is a neurological cause but doesn't know what so is sitting on the fence. Your thoughts would be really helpful.

Many thanks, Clare

Quote:

Originally Posted by AnnieB3 (Post 1083736)

Hi, Denise. Welcome.

Which tests were done?

Since you're short of breath, have you consulted with a pulmonologist to have breathing tests done, especially those specific to MG such as MIP and MEP? If not, I highly recommend that you do that!

Do you have ptosis or double vision? If so, you can see a neuro-ophthalmologist and they can assess if DV the ptosis is fatigable (which is specific to MG/CMS).

How much Mestinon are you taking? Don't make changes without speaking to your neuro, but sometimes it helps to begin with a lower dose initially. The use of Mestinon can be tricky and too much of it will make an MGer worse. The twitchy side effects might wear off after a week or so. How long have you been taking it? The cramping might be from too much of it.

How long have you had symptoms? Sometimes antibodies don't show up until later in some people. Did they do the AChR and MuSK antibodies?

I would have a hard time accepting a diagnosis without some proof, too. But that doesn't mean that proof doesn't exist. There's also the anecdotal proof of taking a photo of your face before Mestinon and then after taking it, to see if any ptosis of eyelids or eyebrows (or nose) improves.

If your symptoms get much worse, such as not being able to breathe in or out well, you need to dial 911. And if you have MG, you shouldn't be out in the hot weather because that makes MG much worse.

Have you had your B12 level or thyroid checked?

Sometimes it really helps to have doctors other than a neurologist assess your symptoms. It reassures you, and gives you more evidence of a disease. Plus, a pulmonologist is vital to have to periodically check on you. They also know that when you're short of breath that you need pulmonary tests right away, and can usually have standing orders for that, whether you have an appt. or not.

Is your neuro an MG expert?

I really hope you can feel better and have more evidence. In the meantime, take it very easy!

Annie