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Old 10-19-2011, 07:38 PM #1
confused2 confused2 is offline
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Default Neuro won't do further tests for MG

I posted a couple weeks ago about possibility of atypical MG. My follow up is my MRI was totally normal. My achr antibodies were normal. I saw the neuro and asked about further testing for MG since it can be so hard to diagnose.

He said not for me. He said it was his specialty he did a fellow at Duke where they had a MG clinic and saw a lot of MG patients and none looked anything like me. He was sooo confident.

The thing is I know my dad had it and he didn't look MG either. Took him 15 years to be diagnosed.

The neuro diagnosed me with ocular migraines. And referred me to a sleep clinic since I'm sleeping so much. Monday 1 slept 16 hours total. 2 four hour naps during the day and then 8 at night.

Crazy!

I'm disappointed he wouldn't check for MUSK or do a single fiber EMG but he said he guaranteed I didn't have MG or MS.

Seems too confident for me. What do you guys think?

Thanks for reading.
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Old 10-20-2011, 03:21 AM #2
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Was this @ Duke? I have been treated there and Unc. Not impressed with either. But duke did run a few emgs on me. I was diagnosed by dr Howard at Unc and no one will ever question that, although I am now seen at Hopkins.

I think you shoul insist you have an emg done if you really believe it is mg. good luck

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Originally Posted by confused2 View Post
I posted a couple weeks ago about possibility of atypical MG. My follow up is my MRI was totally normal. My achr antibodies were normal. I saw the neuro and asked about further testing for MG since it can be so hard to diagnose.

He said not for me. He said it was his specialty he did a fellow at Duke where they had a MG clinic and saw a lot of MG patients and none looked anything like me. He was sooo confident.

The thing is I know my dad had it and he didn't look MG either. Took him 15 years to be diagnosed.

The neuro diagnosed me with ocular migraines. And referred me to a sleep clinic since I'm sleeping so much. Monday 1 slept 16 hours total. 2 four hour naps during the day and then 8 at night.

Crazy!

I'm disappointed he wouldn't check for MUSK or do a single fiber EMG but he said he guaranteed I didn't have MG or MS.

Seems too confident for me. What do you guys think?

Thanks for reading.
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Old 10-20-2011, 05:14 AM #3
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Quote:
Originally Posted by confused2 View Post

He said not for me. He said it was his specialty he did a fellow at Duke where they had a MG clinic and saw a lot of MG patients and none looked anything like me. He was sooo confident.
William Osler said- The more the ignorance the more the arrogance. And I have found that it also goes the other way around. Those who are sooo confident don't think they need to learn any more, as they already know it all. And obviously there is nothing they can learn from patients, who clearly don't have their insight and experience.

Many years ago, when I was a young hematologist I had a patient with leukemia that none of my highly experienced colleagues (who have seen numerous patients) has ever seen. It was so unusual that we weren't even sure it's leukemia and not some other tumor, but it didn't fit anything else and had many features of leukemia.
The head of my department said he has never seen anything like that. For that reason, we decided that we have to take into account the unusual features of his illness in our management decisions and treatment approach. This patient is now live and well.

When numerous neurologists that took care of me over those years told me that they have never seen a patient like me, the head of my department reminded me of this patient, and encouraged me to keep on searching for someone who is capable of a reasonable clinical thought process.

It took me quite a few years to find a neurologist, who thinks in this way. When I told him that I have a very unusual variant of myasthenia, he said that myasthenia is always a very unusual illness. When I asked him if he has ever seen a patient like me, he said that he has seen many patients with myasthenic crisis. When I said that mine is different because I can go from being nearly normal to requiring respiratory support within a short time and then recover within a few hours, he said-those fluctuations are typical of myasthenia, yours are just a bit more extreme. When I told him that I have a completely normal SFEMG, he said-well, it's only a test. I have seen patients with unquestionable myasthenia who have normal EMGs. when I told him about my unusual response to many medications, he told me about other patients he has seen with unexpected responses.

I do not know if you have myasthenia or not. All I can say is stay away from those who know for sure, about an illness in which there is so much unexplained and unknown. Find those who respect you and your concerns and are ready to help you, even if they have not seen someone exactly like you before.
My neurologist told me that he has worked for many years in a large MG center, only after months of taking care of me, when he thought that knowing this may give me more confidence. He said it very humbly, telling me that he was not the one that ran the MG clinic, and does not see himself as an MG expert, but did take care of hundreds of MG patients.

I am sure that he takes similar care of all his patients, humbly trying to understand them and their illness and find the best way to help them lead the most normal life possible, regardless of the name of their illness.
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Old 10-20-2011, 08:55 AM #4
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Confused,

I'm sorry you're having difficulty getting a diagnosis. So many people seem to go through the same thing. As Alice has said, MG is an unusual disease, but many of experience some of the same things. I'm confident you WILL find the right neuro for your situation.

Rachel
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You never know how STRONG you are, until being STRONG is the only choice you have!
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Old 10-20-2011, 10:47 AM #5
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Please don't give up. My neurologist was pretty sure I didn't have MG, and content to just check my progress in six months. I came back and said, "Look, I'm getting worse, and nothing is helping--we need to do something." He sent me to another neurologist, who diagnosed me.

I believe that it's persistence that will finally get you a diagnosis. See the sleep doctor, if it's not a crazy amount of trouble. Even if you don't have a sleep disorder, that will at least cross one more thing off the list of possibilities--and maybe you'll get a valuable referral there.

I'm so sorry you're going through this. As bad as this disease is, I was much more distressed by not knowing what was wrong with me.

Abby
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Old 10-20-2011, 11:18 AM #6
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Thanks for sharing your experiences and thoughts.

I really have no idea what is going on. But I am sure there is something going on since I just keep losing stamina despite exercising.

Has anyone ever had their cheeks affected. I've noticed when I smile after a few seconds my cheeks start to tremble and my lower lip shakes a bit.

The neuro's response to that was it was tension. I don't really understand that.

Since my fatigue has been chalked up to bad sleep for years it would be nice to know if that is the case.

My rheumy followup with me yesterday. She's so kind and available. She was just letting me know my MRI was normal. I'm glad I've got her on my team.

If the sleep study doesn't yield answers I'll definitely push further to rule out MG.

Thanks again for your time here.
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Old 10-20-2011, 08:52 PM #7
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One of the things my neuro pointed out to my husband during my first exam was my inability to raise the corners of my mouth when I smile. In fact, most of the time my corners point downwards in sort of a constant frown! (Improves noticeably with mestinon.)

'Grooved tongue' was another thing. If you stick out your tongue and you see sort of 'wavy' sides to your tongue...well those are the grooves made by the imprint of your teeth! It's another 'tell' of weak muscle. A 'normal' person's tongue does not need to 'contained or supported' by their teeth!!

These two checks (and many, many others) are a part of my exam every time I have a follow up appointment. All they ask before starting is how much and when did I take my last mestinon!!
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Old 10-21-2011, 06:59 AM #8
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When I'm weak, I can't whistle. I don't notice weakness around my mouth except for that. I think I read here that someone experienced the loss of the ability to whistle as her only symptom of MG for a couple of years before the other symptoms kicked in.

Abby
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Old 10-21-2011, 09:55 AM #9
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Confused,
Strangely you sound a very lot like me. I had a father and aunt with MG. My father was diagnosed by the neuro ophthalmologist (often our heroes), but went untreated for two years. He developed severe problems like his sister who died at 42, untreated. He died at 87, diagnosed at age 80. He was never treated aggressively and I don't know why. I saw his doctor because I thought he would have learned his lesson with our family and he ias a well respected expert in the field of MG. Both Dad and I are extremely strong especially for our ages. That doesn't mean that we are not also extremely weak at times and cannot do what we should be able to do given our basic strength, including breathing swallowing and walking. I was reluctantly given pyridostigmine and a rather wishy washy diagnosis of myasthenia. It is now a year later and you will be glad to hear that there is a doctor I saw this week at Vanderbilt who congratulated me on being the strongest patient in his clinic, said he was sorry for the weeds (I am an avid gardener) had no problem with accepting the diagnosis of myasthenia, and explained that since I was not planning on having any more children (I am 65) and my daughters are not, that testing for congenital disorder without more clinical direction would not be very profitable and that he thought it was autoimmune, and response to medication might be the easiest way to differentiate the two. I have had symptoms of this disease going back at least forty years and have been actively seeking a diagnosis for thirty five (off and on). The progression has been slow, but constant. Don't accept arrogance. I was told by Dad's doctor "myasthenia or nothing.". He was willing to go with nothing, but I was not. By the way his SFEMG which he interpreted as a borderline, the doctor I saw yesterday said was definitely abnormal and abnormal like myasthenia. I didn't even have to undergo the studies again. I have had the sleep, MRIs, blood sent to Mayo for antibodies, EMG all normal SFEMG reported initially as borderline abnormalities, but consistent and fluctuating eye findings and getting anxious before studies tended to make my clinical findings much better. I hope that is encouraging, not that any of us want to have this disease, but if we do, it is helpful to have a diagnosis so we can be treated.
Yaaay for clinicians that are physicians. nc
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Old 10-21-2011, 09:58 AM #10
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PS. I also have ocular migraines. nc
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