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Old 09-13-2016, 11:13 PM #1
ErinBear ErinBear is offline
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Default Holding pattern

I think I mentioned that I had some more tests last week. I had an EMG done on Thursday last week. The results were normal again. Since the results have been normal in the past, I knew that might be possible, but somehow it is discouraging. I'm waiting to hear what the next step will be.

I had a barium swallow test done on Friday also. It showed various problems with swallowing, including things routinely going down the wrong way, and weak muscles for swallowing. They made a couple of recommendations immediately, along with suggesting therapy. I will see a speech therapist to learn some exercises to try. I hope it will help.

So meanwhile, I am in a holding pattern.

Take care,
Erin
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Old 09-14-2016, 12:42 AM #2
AnnieB3 AnnieB3 is offline
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Erin, Did they do the SFEMG?

Do you talk? Do you eat? Do you drink beverages? How many people do you know who need to exercise their swallowing muscles because they are weak? Does that sound like something people are just born with or magically lose the ability to do?

I think you have that reversed. Your doctors are in a holding pattern. They are the ones taking you on this diagnostic flight. Hopefully they will come up with something brilliant to do, such as a muscle biopsy, in order to end this medical journey. They sounds as though they know what they're doing.

The thing about IVIG is that it can last quite a while. Much longer than Mestinon.

I hope you and your docs will figure this all out soon. In the meantime, try not to dwell on a negative test. As I write in my book . . .

If it's not cold and snowy out, does that mean it's not winter?
If the Queen of Heart isn't yelling, does that mean she's not angry?
If one can't see the Cheshire Cat, does that mean he's not there?

The truth is rarely found in a negative.


Annie
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Old 09-14-2016, 01:02 AM #3
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Hi Annie,

They did the EMG, and I know they did some needle poking, but I don't know if it was SFEMG. They said they only did that on Mondays, and I was there on Thursday, and the doctor who did the SFEMG testing was not there. However, the university neurologist seemed to think he had the information he needed. He wants to repeat the blood tests again, but we just repeated them a few months ago, so I don't think that would be logical. It seems like that would just take more time and would not provide useful information. (They were normal.)

I don't know anybody else who needs to do therapy for swallowing issues, although I have heard of it. I have a friend whose elderly mother needed swallowing therapy. She was over 100 years old. That is the only person I've ever heard of who needed some speech therapy for this type of problem. I'm only halfway there!

Thanks so much for the encouragement. I don't what is going on, but I wish we could figure it out and figure out a better treatment plan. Yes, IVIG is supposed to work better, but for some reason, lately I am not responding as well to it. It is still doing something, but it's just not going as well. I had IVIG yesterday and today. Maybe it will kick in better this time, and I'll have more of a positive effect. Maybe it will surprise me! I really need something to work so that I can get through daily life better. I guess it will take a long time for anything to come out of the process with the university clinic. I think I am going to have to be patient, but it is awkward.



Take care,
Erin
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Old 09-14-2016, 01:38 AM #4
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You would know if you had a SFEMG. During an EMG, they don't need your help. They do in the SFEMG. You have to, for example, lift up the fingers in your hand while they do the EDC muscle in the hand/forearm. A similar flexing of muscles is done in any area tested.

I was being really sarcastic about the exercising of swallowing muscles! Only those with neuromuscular issues would need to do that. And if someone has MG, exercising will only minimally help. Only more acetylcholine (or other treatments affecting the underlying autoimmune process) will help!

In medicine, usually the simplest answer is the right one.

Go ahead and let them repeat the blood tests. Antibodies fluctuate over time.

They need as much evidence as they can get. So do you!

Annie
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Old 09-14-2016, 08:56 AM #5
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Well yes, then, they did the SFEMG. At any rate, the results were within normal limits again somehow. I don't know how this keeps happening. I think my body is strange. Clearly there is some sort of a problem, whatever it is.

Yes, of course, I would repeat the blood tests if they really wish. I did not get any messages from them yet asking me to come in and do any tests, so I don't know what is happening.

My friend's mother did have a positive effect from doing the swallowing therapy exercises. As you mention, I don't know how much it will help me, but I want to try anything that I can. Mostly, I really think I need some additional treatment at this point. I just really wish there were some way for things to move along more quickly. I wish it had not been years of trying to figure out a diagnosis, although I know that this has happened to others, also, and I wish everyone could get a diagnosis more easily! Even though I had IVIG treatment Monday and Tuesday, I feel even weaker today. It feels like somehow it didn't take hold this time, which has happened lately. Maybe I will hear from the university doctor today about their plans for what to do next. I hope so.

Thanks again for everything, and for the support and kindness you show to me and others here!

Take care,
Erin
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Old 09-14-2016, 10:09 AM #6
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Smile ErinBear

I have been following you all along and had a question. You have probably mentioned this before, but maybe I missed it. Have you done plasmapheresis treatments. The IVIG did not work for me at all, but that did.
Best of luck
FREDH
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Old 09-14-2016, 10:50 AM #7
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Hi Fred,

We have not tried plasmapheresis treatments yet. I was doing well with IVIG treatments until recently. I don't know why I am not responding as well. I have wondered about plasmapheresis also.

Thanks, and take care,
Erin
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Old 09-25-2016, 10:12 AM #8
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I just thought I'd post a short update. There is a chance they might do a muscle biopsy at the University hospital. I would have to go for another appointment to be evaluated. The neuromuscular specialist is not sure I would be eligible for the test because my breathing function tests were so bad on the last visit. He is also not sure the test would provide any useful results. I think it is worth trying, although I would have to qualify medically for the procedure.

Meanwhile, I'm not doing that well, and I think I may end up in the hospital this week. My local doctors are discussing what to do and I will be in touch with them tomorrow. (sigh)

Sending good wishes to everyone out there who deals with all of this on an ongoing basis. Keep on keeping on!

Take care,
Erin
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"Thanks for this!" says:
pingpongman (09-25-2016)
Old 09-25-2016, 03:52 PM #9
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Erin,
Hate to hear you may have to go the hospital. If you do, consider asking about Plasmapheresis, it may surprise you.
Take care
FREDH
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Old 09-25-2016, 06:21 PM #10
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Quote:
Originally Posted by FREDH View Post
Erin,
Hate to hear you may have to go the hospital. If you do, consider asking about Plasmapheresis, it may surprise you.
Take care
FREDH
Hi Fred,

Yes, I will be asking them about that if I end up in the hospital. Thank you so much for your kindness and encouragement. I really appreciate it!

Take care,
Erin
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