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Old 09-23-2016, 10:16 PM #1
winic1 winic1 is offline
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Default Suspected diagnosis of MG, start with Imuran?

Went to a new neurologist.
My blood test is still negative, yet he agrees something is wrong.
Mostly, he declared, and pushed that I should just go to the Mayo Clinic to get completely tested and diagnosed.
Otherwise, he said, if I really want, he will work with me, but without a proven diagnosis, was I really ready to be put on Imuran?

Is that really how they start? Slap the scary immunosuppressants on you first?

I am 1,200 miles from the Mayo Clinic. I don't have money for plane fare. I don't have money for staying in a hotel. I cannot sleep in a bed, I need a decent recliner so I can stay halfway upright (pile of pillows on bed does NOT work) or I can't breathe, so I can't stay in just any hotel. I have no one to go with me on the trip since hubby would lose his job and we have a 14 year old daughter to take care of, and since I have vision, balance, breathing, back, knee, etc problems as well, I cannot go alone.

So, even if I start working on getting to the Mayo Clinic, it will easily be 6 months to a year before it might happen.

So, I'm wondering, is starting off with Imuran typical, or is this guy just trying to scare me off permanently so I won't be his problem?
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Old 09-24-2016, 09:53 AM #2
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Hi Winic1,

Like you, I have had negative blood tests so far, but my doctors agree that something is wrong with me. Has your neurologist said anything about trying Mestinon first? If he thinks you may have myasthenia gravis, it is usually the first thing they try, I think, and it is safer than Imuran. It also starts working more quickly. Mestinon starts working in about 30 minutes. It also wears off quickly, so you have to keep taking it if it helps you. I believe Imuran takes at least a couple of months (maybe longer) to build up in the body and start taking effect.

If you are not able to sleep while lying flat in a bed, you could also ask your doctor(s) for a referral to a pulmonologist, hopefully one who has expertise in sleep issues. They may say that you need to have some breathing tests, and maybe an overnight sleep study. They might say that you could use a machine to help you breathe better overnight. I use a BiPAP/AVAPS machine which helps me overnight. I can also use it during the day if I am having a lot of trouble breathing.

If there are any other neurologists in your area, you could try getting a second opinion. Going to Mayo Clinic might be good, yes, but another option might be to see a neuromuscular specialist at a University hospital if there is one in your area. That might be closer than the Mayo Clinic, and perhaps you'd be able to make that trip a bit easier than the 1,200 journey to Mayo.

Sending caring thoughts your way,
Erin
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Old 09-24-2016, 10:31 AM #3
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Smile winic1

Like Erin, I think your doctor is jumping a bit ahead. There are lots of drugs out there to treat MG. The first line usually being mestinon. I took mestinon for 3 1/2 years before I had 2 crisis periods, and had 2 move to stronger meds. For some mestinon is all they need.
For the last 9 months, I have taken Imuran and some predisone. However, I'm now slowly cutting out the predisone.
I know Imuran has side effects, but in my case, I have no choice. I have to slow down the MG with whatever. I have felt much better since the imuran, predisone, and lots of mestinon.
No one can say if I will continue to be better or not,but seems to be working.
I hate to say this, but try to find some medical financial support somewhere. MG can be a bit expensive to treat. Doctors, test, medications, and all. But, you must do it, or you will become very ill. Then you will be of no use to your family.
Hope you find help
FREDH
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Old 09-24-2016, 12:51 PM #4
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This guy was the second opinion. Actually, if you count gp's and neuroopthalmologists, he's about the five hundredth opinion. Problem here in my local-yokel area is that no one will diagnose ANYTHING without a lab report to tell them so. Nothing--not a sore throat, not bronchitis, not a bruise, nothing. And when it looks complicated, they pass you off to someone else, then someone else, then someone else, it's always someone else's responsibility to diagnose, even when they've passed you around a circle, twice. No lab report, no problem. period.

Been to a sleep lab twice. Not sleep apnea. It's not that I can't breathe, it's that in certain positions and situations, I just sort of don't, it slows down and gets really shallow, until I feel it and work at getting back to okay by changing position and forcing bigger breaths. Told that to one of the sleep pulmonologists, his answer? Yeah, we saw that. So, I ask, what is it? what do we do? No answer, changed the subject, sent me out the door. If it isn't easy, if it isn't standard, if it isn't printed out with a name on a lab report, it just doesn't exist. I CAN do the breathing tests the pulmonologists send you to, because, of course, you're sitting there and told DoThis, so I do. It's not real life, but because I CAN make it happen, consciously, when trying. I'm fine. Only some days, I can't say but a few words at a time without heaving a breath. I can't stand and talk. I can't bend over to get something from knee level and keep breathing.

I am getting so tired of sitting down and waiting to be okay to get up for 5 minutes to try to do something again.

My ophthalmologist is sure I have mg. But he can't treat it. Everyone else in the area belongs to the same corporation that's bought all the hospitals and doctor groups for 60 miles all around. No lab report, no diagnosis. Period.

I am sure I have it. Have for a very long time, and not just in my eyes.
Have a bunch of other things, too, the fun stuff like fibromyalgia (took them 23 years to diagnose that one), which is also vague and un-lab-reportable. And little over a year ago, one of our lovely local doctors actually wrote "yuppie flu" in my chart.

Have an appointment with the only potentially useful rheumatologist in the area in mid-December (booked that a month ago) because I have blown 4 joints since last January, doing nothing. Last one--tore my ecu tendon in my wrist by simply lifting my hand off the couch into the air. really. tore a tendon on thin air. But, since the blood test came back barely out of normal, I have to wait nearly 4 months to see the rheumatologist, who will probably repeat the blood test and kick me to the curb. So I sit here, literally sit here, afraid to move because I don't have many working parts left and I can't risk losing any more.

I'm an hour and a half out of New York City. Three and a half from Boston. (Forget Yale, they're just a name with nothing to back it up anymore.) This neurologist is "Director of Neurology, Mount Sinai Health System at CareMount Medical" located a little bit outside NYC. But he says rather than keep going doctor to doctor and having to have them all talk to each other, I should just go to Mayo where they can test everything all at once and sit down together and figure it all out. He thinks that mg is "the low-hanging fruit" and that they'd find I have some really rare neuromuscular thing.
Told him over and over I cannot get to Mayo anytime soon. Don't have the money for airfare or hotel. Don't have anyone to go with me, and I certainly can't go alone. I get so plane sick (and that was before the major accident 7 years ago and all the complications since then) that they will probably end up taking me off the plane in a stretcher. I can't sleep in a hotel unless I find one with a good recliner, and you can't trust what they tell you, you get there and there's some rinkydink piece of worn out crap in the corner that isn't even fit to sit on, if there's actually one in your room at all. I don't see well, I don't always hear right, I have balance issues, pain issues, breathing issues, issue issues....I cannot go alone. Even if I had the money. which is going to take many many months to come up with. I have good insurance, but they don't pay for plane tickets and hotels and meals and taxis and all.

He said he could manage things, once Mayo diagnosed and made recommendations, since it would be difficult to keep going back there for treatment (ya think? it was difficult getting to you, you jerk, my husband had to take a day off work during a major company-wide project on the new computer system that goes live next week and they are nowhere near ready for. But I waited 2-1/2 months for this appointment, and there was no other choice.) But he wants someone else to do all the work, first.

I would be just fine with the 'bandaid' of mestinon so that maybe I could stay on my feet long enough to cook dinner, or vacuum the dog hair off a rug. But nope, I have to wait until I can accomplish the near-impossible of going halfway across the country and HOPE they come up with something.

I am so angry, I think mostly at myself because, while waiting the 2-1/2 months to get this appointment, I actually let myself believe that something would finally get done. Stupid, stupid, stupid.

At least anger provides a boost of energy, and I'll get that much out of this.
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Old 09-24-2016, 02:06 PM #5
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Hi winic1,

I hear you! It is so hard when you have negative blood tests, and doctors want to see the positive lab results. I am in a similar position. My doctors have recommended going to Mayo in the past also, and it is not possible for me to go, either.

It sounds like you've tried to have this discussion with the neurologist before, but if not, have you tried asking him/her if it would be possible to try Mestinon? Mestinon is a fairly safe medication. Maybe you could ask your doctor if they would be willing to prescribe a small amount as a trial to see what happens. If it helps you, great. If not, then you'll need to keep looking for other options. By the way, Mestinon is more than just a bandaid. It's true that it doesn't cure the disease or alter its course, but for many MG patients, it really helps tremendously and provides all the treatment they need. If it helps you, it may help you feel much better, breathe better, and be able to do things you would like to do more easily and safely.

When you saw the pulmonologist, what breathing tests did they order? Unless they order the right tests, weakness of the respiratory muscles does not show up. That might be what you are experiencing. They need to order tests of maximum inspiratory force and maximum expiratory force, which are extra tests beyond the typical ones they generally order for pulmonary testing. You might ask the pulmonologist, if you are still seeing that person.

Another tactic might be to ask your ophthalmologist about referring you to a neuro-ophthalmologist if there is one in your area. They can diagnose MG. I know a friend who had their MG diagnosed that way when other tests kept coming up negative.

I hope the visit with the rheumatologist will be helpful. Maybe you could ask that doctor for suggestions also. They might have recommendations of other doctors to see, or other things to try.

It really is hard to wait for an appointment, and then have a discouraging outcome. Please hang in there, and take good care of yourself. I'm sending lots of good thoughts your way!

Take care,
Erin
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Old 09-24-2016, 04:29 PM #6
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Pulmonologists are ancient history. Nobody looks farther, nobody investigates. As I wrote, they even said they saw the problem happening. But nope, wouldn't even discuss it at all with me. Changed the subject and told me goodbye.

Been to two neuro-ophthalmologists. The first one, at a major, ivy-league University nearby (which is really just riding on their reputation anymore), was/is, unfortunately, going senile. Yelled at me and yelled at his people five different times because they hadn't signed me up for their patient portal yet (kept interrupting the examinations to ask, yell, then call front office or various technicians and yell at them.) Went through the eight pages I had had to fill out before going there re-asking me the questions, then yelling at me when I didn't repeat the exact words I had written (to the effect of: Him-What color shirt are you wearing? Me-Burgundy. Him-But here you wrote down Maroon. Which is it? Why are you changing your answers on me? So which is it, burgundy or maroon, and why did you write burgundy if you mean maroon?) and then in his final report, he got ALL of it wrong anyway (I started wearing glasses in 3rd grade, at 7-8 years old. He wrote that I started wearing glasses in 8th grade, at 13 years old. And on and on.)
His resident and his technician were standing right next to him, just behind his elbow, playing with her cell phone laughing at things on the internet the whole time he was grilling me. He didn't even notice. It was pathetic. But he's a huge name here on the East Coast. So, kinda hard to contradict.

Then I saw one, well, actually 2 because she brought her partner in the second visit, neuro-ophthalmologists at Columbia University in NYC. She said it was disgraceful the way I'd been passed around, and there was no reason for it and she would figure this out no matter what, she promised me. Which is why we made the trip into the city the second time, too, when she brought her partner in as well. After spending the whole day there, mostly waiting, she said, gee, you need something done, don't you, here, go see this vascular doctor. And disappeared. We never heard from her again. My local ophthalmologist repeatedly left her messages and sent her emails, she never replied. I called several times, nothing. I asked for her visit report/evaluation about 2 months later, I got a copy of one sheet with a few illegibly scribbled notes on it, nothing had ever been written up. She just disappeared on me. And she's not the first, to promise they will stick to it and help me, and then just literally disappear on me, never responding, no more appointments, not even a "kiss off, honey". Nothing.

Don't have much hope for the rheumatologist. I know the local system and the office, and her two partners (one I saw for a bit many years ago for the fibromyalgia, and left, he was prosecuted for medicare fraud; the other I saw about twice after the first, he is so arrogant that God himself couldn't begin to approach that man, he has quite the reputation in the area even if I hadn't experienced it myself). But she's all I can get to, I no longer drive, this is basically a rural area, there is no public transportation, but the town set up a volunteer service so if you're lucky someone signs up for your ride. If not, you don't go or you call a taxi from the nearby small city and pay $60-$80 per ride to get to the doctor.

This last neurologist kind of muddled past mestinon, obviously he doesn't think much of it. so, I'd be forcing him to take me on instead of going to Mayo, and then I'd be forcing him to treat me in a way he doesn't believe in. And so if there were problems with any of it, the I-told-you-so's would be flying all over me. My local gp doesn't know squat about mg, he ordered the AChR test on my insistence, when it came back negative he was satisified, when I told him the percentages of missed positives, etc, he was genuinely surprised. But, with the new corporation that owns them all, they get clocked in and out of each patient visit, and get disciplined for spending too much time on anyone. So it's not like he can take the time to learn for himself how to help me, without repercussions, or spending his own personal time on it, and he has 4 kids ages 9-15 (he lives in town. our daughters went to preK and K and still go to dance classes together).

It does seem that latest neurologist wanted to scare me off, threatening Imuran right off and not even suggesting or considering Mestinon. So, one thing I know for sure is if a doctor doesn't want to treat you, you're better off not going to him even if it means getting no treatment at all. Some day I may just finally get to Mayo. Meanwhile, it's 3 years until my daughter graduates High School and my son graduates college. I just have to be really careful with this poor ol' decrepit body until then.
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Old 09-24-2016, 09:30 PM #7
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You are within driving distance to Mass General, St Elizabeths, Brigham and Brighams, Lahey and even Hopkins. They are all very reputable hospitals. I have been to Mayo in Rochester, if I were to do it over I would have just driven to MA. Sounds like the whole trip, time, and expense to Mayo is a lot for you and MA might be easier and able to happen sooner. good luck----hope you find some answers
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Old 09-26-2016, 06:57 PM #8
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Quote:
Originally Posted by northerngal View Post
You are within driving distance to Mass General, St Elizabeths, Brigham and Brighams, Lahey and even Hopkins. They are all very reputable hospitals. I have been to Mayo in Rochester, if I were to do it over I would have just driven to MA. Sounds like the whole trip, time, and expense to Mayo is a lot for you and MA might be easier and able to happen sooner. good luck----hope you find some answers
I'm in CT, and we did the rounds when trying to get some answers on the vascular thoracic outlet syndrome that developed after the accident/clavicle surgery a few years ago. Hit Yale, Columbia, NYU, and Mass Gen., after going through several more local places. Yale and Columbia pulled the disappearing act after passing me off to yet other departments during the visits. NYU was decent. Mass Gen had, at the time, the world guru of TOS. So we went up for 4 days. Saw him, got testing done. Then waited. Then had insurance refuse what he proposed. Then found out why they wouldn't cover it. Guru had mixed up someone else's MRI and records with all of mine, and misdiagnosed me based on that, and put her symptoms in place of mine, and therefore the insurance wouldn't cover treatment for "pain" instead of investigation for possible vascular occlusions. Forever. Insurance will never let me have those tests ever again since they reviewed twice, but based on faulty info. When I finally saw his report, and saw wheat he had done, I called him to make aware and discuss what to do. Guru said, "Well, if we did not communicate to that extent (huh? you mixed someone else's MRI in with mine, as I never had one of my neck!) then I am not the doctor for you" and he dumped me.

And, because we had a big lawsuit pending against the guy who clobbered us in the accident, my lawyer said i couldn't pursue correcting his report (as it would complicate things). So, there are pages of improper analysis on me up at Mass Gen, written by a very big name doctor there.

But, mostly, I cannot start "the chase" again. Every time I go to a new doc, I can't help but let some hope sneak in, and then BOOM, it blows up in my face. I can no longer drive, so hubby has to take time off from work, as well, and that's not a good idea right now (they've been "cost-cutting"). Four days in Boston cost us over $1100. And, the fancy hotel right next to the hospital didn't even have the decent recliner chair they promised me it would.

Most Recent Jerk is probably right. I probably should go somewhere where they can and will evaluate everything at once and put it all together, all at once. I've blown 4 joints/back since january, doing NOTHING. First appointment with local rheumatologist is mid-December. Maybe instead of 2 or 3 or 4 separate weird, rare diseases, it's all related and should have an overall treatment plan. Orthopedist for latest problem (tore wrist tendon just by moving my hand) prescribed a drug for the rheumatoid arthritis they think I have, after reading paperwork I called in to my cardiologist to check on the drug, she said No, not more than a couple uses short term, but other doc had said daily for indeterminate time (like until December when I can see rheumy). So, instead, I am doing nothing. again. until December, when I will probably get caught between the Rheum & Cardiologist, going back and forth "he said, she said" until something works out or nothing works out. I cannot start chasing again. I just can't do it. And then I would still need someone nearby to handle things for me, and do I really want to use this guy who doesn't have the brains or guts to diagnose or treat me himself, who wants someone else handing him the paper with the diagnosis on it?

Like everything else, I will just have to adapt and be careful and hope I never end up in the local ER, because they WILL kill me.
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Old 11-12-2016, 10:50 PM #9
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I'm shocked to hear all these stories. All the the research I have done says that no testing for MG is 100% and that it is typical to prescribe Mestinon as a means of diagnosis. When we finally pegged done MG for me, we ran two test, both clean, and started Mestinon. Took two weeks, tops. I would be looking for docs with more MG experience, cuz that just sucks.

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Old 11-17-2016, 07:56 AM #10
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Hi,
I'm new to the group .... I'm also fairly new to myasthenia gravis, stiff-person syndrome and POTS dysautonomia.
Anyway, that drug is definitely heavy duty and I personally wouldn't start there at all. It's extremely concerning to hear that you're having that much trouble breathing!
What city/state are you located in? My doctor is in Dover, NH and he saved my life just in time. The MG has a good hold on my lungs and you need to be extremely careful if in fact it is MG attacking yours!

I started with a low dose and quickly titred it up - MESTINON. My doctor immediately set me up for IVIG infusions in my home. This is the standard treatment.

You should know pretty quickly when you take the Mestinon - I know I felt improvement in my breathing and my muscle weakness right away.

Go to the ER about your breathing. Ask the hospitalist to please give you a trial of Mestinon while you're there at the hospital so they can supervise you. Ask them to call in a neurologist to do a consult.

Don't wait on your lungs - please. Educate yourself as much as possible.

God bless,
Kelley Z
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