[mg_candi]

In June of this year (5 Mos ago), I had a droopy eye the day of my graduation, and my foot slipped coming up the stairs. My friend had pink eye, so I went to her doc who gave me drops. Droop got worse. A couple weeks later, I went to an eye doc who sent me to a neurologist. July 17 Neuro doc said I present textbook MG. She started me on mestinon and it seemed to help a few days then my symptoms increased 10 fold. I had major weakness in legs and breathing.

Went to ER July 25 and was admitted. IVIG treatments 3 days, clear chest CT scan. Positive tensilon test.

Meanwhile, mg antibodies seronegative. Musk neg, LEMS positive (but doc said it had to be false positive because of the lab that did it so wanted retest.)

I was in hospital 4 days, home 4, back in hosp 3 days with 2 more IVIG and started on Prednisone. Breathing got better, and limping was better, though not normal walking. Went out on short term disability for work.

Doc then increased Prednisone and started me on Imuran. Did second LEMS test which came back neg (after being imune supressed ).

Went to MAYO in Sept for 2nd opinion with the neuro there. I don't know why I thought they would pursue the LEMS angle. They wanted to, but w diagnosis of MG already, they suggested my doc take me off all meds and retest. They did single fiber which was neg (again already medicated), breathing tests which showed muscle issues with intake and exhale, but no other lung issues, and sent me home.

My neuro put me on home IVIG treatments (4 days in a row once a mo) in Aug, Sept, Oct. She just reduced to 2 days Nov 1 and 2nd.

My primary care sent me for a sleep study that showed mild apnea, and leg twitching. She said that could be iron, so did iron study. It was high, and liver enzymes high. Tested genes for Hemacromatosis which was neg. Sent me to a hemotologist who is redoing tests and if they don't go down in Nov then will get liver biopsy in Dec.

In Oct, I really had a good month. Walking almost back to normal, and went back part time to work. In keeping it slow, decided to do one day a week in office, and rest virtual. Good move, because one was hard! I have been back 3 weeks, and can't get more than one day. I had headaches so neuro did MRI which was clear. She put me on amatriptoline for headaches. That has made me feel WEIRD... last week didn't feel like it was my body! She told me to back down on it last week.

Symptoms are worse, and progressed rapidly again on the last 2 days. I can't hardly walk, and am having breathing issues again. I'm so frustrated...

Candi



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[AnnieB3]

Welcome, Candi.

It sounds as though you've been through the ringer.

First, did they test you for the TPMT mutation BEFORE they put you on Imuran?

http://emedicine.medscape.com/article/1829596-overview
https://labtestsonline.org/understan...tpmt/tab/test/

It is extremely important that you figure out if this is MG or LEMS! People with LEMS are often at risk for small cell lung cancer. It's treatable if caught early.

And treatment for LEMS varies from that of MG.

Why doubt a test, simple because of the lab that ran it? Do you have copies of all of your test results? If not, get them.

What eye drops did you have for the pink eye? Some antibiotics can make MG worse, as can other drugs!

Do your docs just like throwing drugs at you? Amitriptyline is not necessarily a first line drug for headaches. Did they attempt to determine what was causing your headaches?!

Did you know that Amitriptyline inhibits the release of acetylcholine?!!!

http://www.ncbi.nlm.nih.gov/pubmed/6498615

Time to educate your doctors! You could potentially go into a MG crisis just due to this drug!!! Call the prescribing physician immediately.

You need to be extra careful with adding any new drugs when you have MG or LEMS. That means doing some research for interactions with MG drugs and possible adverse reactions due to MG. A conversation with a pharmacist is helpful, too. And tell all of your doctors that there is a list of drugs MG patients should not have (i.e., Ketek and Quinolones), and ones that might make MG worse.

Also, get your vitamin B12 and D checked right away. Many people have those deficiencies. A lack of B12 could be the cause of leg twitches, OR an electrolyte imbalance.

Make sure that your doctors THINK before they DO! You don't want to end up being a medical mistake.

There is so much to learn about MG and LEMS. But you need to find out which one you have first. Mayo has been known to hospitalize patients during a drug withdrawal to make sure that they don't go into a crisis while doing that.

What else do you need help with? Don't hesitate to dial 911 if you're getting worse (which it sounds as though you are), okay? Don't drive yourself in, because MGers can go downhill fast when they're getting worse. It's a very unpredictable thing. You shouldn't push MG when you're this bad. Just go in and get some help.

Take it easy, and keep asking questions—AND question your doctors.

Annie

[mg_candi]

Annie -

Not sure what TPMT mutation is, but prob not. She didn't do many of the tests because I went downhill so fast and I reacted well to the mestinon and IVIG. Same reason they can't get the difference for LEMS and MG now.

I had a CT for lungs and it's clear. My understanding w LEMS is that it can be cancer not just SCLC. I am kind of worried about the liver right now. Everything else has been reviewed closely in the last two months. My neuro isn't going to let that just go. She will make sure they keep looking, but if nothing is presenting yet...

She said treatment for the two would be the same except treating the underlying cancer if they find it with LEMS. What do you think would be different?

Yes, the antibiotics for pink eye set off the mg. Deffinately. Eye doc confirmed. Not on them now of course...

My neuro didn't know amitriptyline had a mg reaction. It wasn't on the list she was looking at. Yes they tried other stuff for headaches. Sure it's prob from the IVIG treatments. MRI came back ok. I am not taking any pain meds because of the mg. I am coming off the amitriptyline now. I will tell her about the blockers. Your supposed to wean on and off that drug, but I am low enough now I'm just stopping. Good comment on the release of acetylcholine. Did not know that. I would think my neuro should but.... pharmacist didn't know either. I have to tell them all the time on other things. I have been my own advocate. Now my primary care is also watching.

B12 and D were fine. Iron was/is still a MAJOR prob. Really high and percent really high. My white and red blood cells have gone up and down and up and down. It's been weird. Has me worried about lukemia or something. They go bad then doc worries and retest and then they straighten out. Not sure what is going on there.

If it gets worse my hubby will drive me. Done a crisis twice already... thanks for the pointers!

Candi











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[mg_candi]

There is a more recent study showing humans shouldn't have ach inhibitor factors from there peptic doses of antidepressants on the same pub med site. The study you sent was for a rat. Doesn't mean it's not good, but it DOES explain why I started going backward. Maybe it doesn't effect everyone that way, but I think it did me. I double checked and Amitriptyline is not on the mg contraindications list. Prob should be on mine anyway...

Thanks for the info Annie!!!

Candi

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[AnnieB3]

Candi, Not all drugs that make MG patients worse are necessarily on that list. I've done far more research than that one article, but I'm not doing well right now, so that's the best I could do. The science, however, is valid.

Whenever you consider a drug, search the drug + acetylcholine to know what effect it might have on you.

And it's not only one drug, but anything else you are taking or "intaking," such as certain foods (nightshade foods, caffeine, etc.).

Too much magnesium can make MG worse, too.

The enzymes could be high due to TPMT. You need that test right away.

And I hope you will see a hematologist. Sometimes regular docs miss hemochromatosis and don't order all of the necessary tests for that.

LEMS gets worse, better, and then much worse. It IS different than MG. Mestinon doesn't always help. Some patients use 3,4-DAP.

http://www.ncbi.nlm.nih.gov/pubmed/20979551

Did they run an Acetylcholine Modulating Antibody test? Anti-striated muscle antibody test?

Yes, you can have other cancers with LEMS as well. And that's exactly why they need to know if it's MG or LEMS.

What is your exact B12 level? Your body can be deficient in it even at so-called normal levels.

Doctors and pharmacists don't know everything. No one does.

Annie

[mg_candi]

I read about the magnesuim and have avoided it. Great help on the search terms adding ACH. I will do that. I printed the whole MGFA meds list and amitript6was on there and gave it to my doc. I plan to give it to my neuro as well who should know better...

I have a hematologist. My gene test for Hemacromatosis was neg but he said the only way to really know may be the liver biopsy. I will probably get one in a couple of weeks. He wanted to wait until next week to retest iron and liver and if it's still bad he will do the biopsy.

Neuro did TMPT before starting me on Imuran. I'm good. On it 3 months.

After one week off amitriptyline I am walking fine an mg is much better. Breathing got better in 48 hours. We won't get a solid antibody test with Imuran and prednisone now. If I come off everything I am afraid mg gets bad and puts me back in hospital. I don't know how we get LEMS without going at risk... scary mostly.

Not sure about other antibody tests, but again so imune supressed I'm not sure if they would be valid now. What do you think? Is it worth risking it? How long would I need to be off everything do you think before it would be a valid test? My primary said 6 to 12 months maybe... I will of course check with my neuro. I just don't think I can go months non medicated as bad as the mg got.



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