question

[lbeyerl]

wright-

Will this single fiber EMG be able to detect anything else but MG ? What i mean to say is if there was any type of MND or neuropathy or any of that, woudl this EMG pick that up as well or is it only specific for MG?

 

[wright]

It will be able to detect other things other than MG. It is a powerful technique that can see things your typical EMG cannot. It isn't often done because not a lot of neuro's know how to do it (mainly done at academic institutions). Let us know how it goes.

 

[lbeyerl]

Hello All:

Have been logging in periodically to see how everyone is doing, but have been afraid to post information about my condition because it seems like there has been an influx of scared new members.

To make a long story short I was seen by the Duke Neuromuscular clinic last week. I had abnormalities on a single fiber EMG, 2 of 20 sets were abnormal when they tested the fibers in my left arm. A regular emg of my right arm was normal. The doctor noted that I have atrophy in both hands and in my knees.

They have tested me for strand of MG called MuSK and put me on mestinon to monitor if the medicine improves my symptoms. The lab results have no come in yet. I have been on the medicine for a week with no improvement. The doctor said the atrophy points away from MG but she would not say what it points towards..

The doctor is concerned and moved my 6 week follow up to 3 weeks. She was especially conerned that since starting the medicine, i have developed a slight slur in my speech. The medicine usually treats that in MG patients she said.

I just can't believe how things have moved so fast. I am having the worst trouble with my arms and have had to modify the way i do day to day tasks. I am only 22, this seems surreal. The doctor presented other possibiliities like cervial transverse myelities, and mitochondrial disorders but said those seem less likely.

It has been almost 4 months since everything began, and I feel like I just want to know what is wrong. If it is bad, I want to have time with my family and boyfriend...not spend my time going through a ring of tests. I am so sad, and so frustrated. They just have to find a way to diagnos these kind of problems sooner.

 

[BethU]

hi, Ibeyerl ... About the mestinon. I was mis-diagnosed with MG for a few months, and reading the MG forum, it seemed that Mestinon does not always relieve all of the symptoms of MG. For instance, it may improve blurred vision while making your speech worse. Some people do get across-the-board relief, but not all.

It is also tricky getting the correct dosage, as an overdose has exactly the same effects as an underdose, i.e., your original symptoms stay the same or return. So don't be discouraged too soon ... it may be dosage related.

You might check out the Myasthenia Gravis Association's forum. It's based in the UK, and has some good experts on the forum, as we do on this. People are very helpful.

Good luck. I hope this turns out to be treatable.

 

[awieleba]

HI~

I am sorry that you are going through this! Did you ask about als or did they bring it up as possibilty?
I think what Beth had to say is good to know about the meds, so keep with it!

peace to you,

april

 

[lydia]

Hello Lbeyerl,

I am sorry you are sad and experiencing all of this. How scary it must seem. I remember your first doctor was so dismissive; you want an attentive one...and then the new one pays so much attention and then moves up the follow-up, and then it all becomes even more alarming!

I noticed this doctor has no doubt that you have atrophy in your hands and knees; not just weight loss as was previously speculated. So rapid atrophy like that does not go with MG...but he didn't suggest anything else that might be behind it?

And the slurring you mentioned, do you think it is connected to the medicine because it started after the medicine or did you notice something beforehand? Could it be a side-effect?

Thinking of you-

Lydia

 

[lbeyerl]

I think it probably makes a difference that i had been seeing a regular neurologist, and this time i saw a neuromuscular specialist at DUKE. I actually saw three doctors and duke and each gave me a clinical exam and then one did a emg, and another did a single fiber. They were all pretty much in agreement that they are stumped but hopefully had it narrowed down to the three things i mentioned above.

The slurring did not start until AFTER the mestinon. One side effect is increased muscle twitching. I noticed my tongue would twitch A TON and the slurring came along with that. So Beth, I think you are right about it being a side effect.

When I asked the doctors about the atrophy they said most times it is hard to recognize by a doctor because all body types are different and unless it is super pronounced--some doctors will disregard it as weight loss or just the way your body looks. She told me to monitor it and she would see if it had progressed in 6 weeks when i go again and if it does they would exlpore other options. I did not bring up ALS, because her words to me were that it "does not look like ALS". So I have to go with that.

My doctor said that in MuSK MG a lot of patients note muscle twitching. Which i have. So hopefully that blood test will come back positive and I can start back to a normal life!

I must say it did feel good to have a doctor confirm that i was not crazy. In all three clinical exams they noted abnormal weakness in my arms and legs, and the most weakness in the neck.

Now if i could get my eye lid to droop, that would be a miracle!

Thanks for all the kind words. Thinking of you all also.

 

[awieleba]

Thanks for the update.

How were your reflexes? Please take care during this time and know that we are here for you.

blessings

april

 

[lbeyerl]

Thanks for everyone for the encouraging PMs. My family and I appreciate all the advice you all have given us.

Second Duke appt is this Thursday. After corresponding with the doctors (who told me to call when new symptoms arise, or something changes so that they can document it), they are now leaning away from MG. I am very stiff in the morning, and although I am tired by the end of the day, I have weakness in the morning and thick speech as well. Mestinon has not helped I gave it another week long shot hoping it would.

I have trouble clenching my hands in a fist, and when typing or using my hands it is hard to get my pinkies to join in on the action. I have a bruise like feeling in my palms toward the pinky side, feels stiff and sore.

It is so scary to have no idea what is going on with your body, but at the same time, I have been trying to do things as usual. It is what it is right. If something is wrong, I would hate to think I spent my best days obsessing over my health. If something isn't wrong, I would hate to think I spent so many days obsessing over my health!

Thanks again for all the kind words, will hopefully bring back a few more pieces this week.

 

[crystalkk]

Good luck with your appoinmnet on Thursday, and keep us posted.

 

[awieleba]

Good Luck at your appt. It seems like you have the right attitude!
keep us posted, we do care.

bless you

april

 

[brendapals]

lbeyerl,
Yes, we wish you the best at your appt on thurs. Let us know what you find out, and,
Never give up,
Never let up,
Never lose faith,
we'll be here for you,
-brenda

 

[lbeyerl]

WOW! What a difference one doctor visit makes guys~

This time single fiber emg was NORMAL. My REGULAR EMG was abnormal and my doctor said that the pattern of the abnormality is the exact OPPOSITE of a pattern that you would see in als. My doctor said "You do not have als, it has now been officially ruled out". God is good! I know this happens with some people who later get diagnosed but I believe my doctor because...

My motor unit potentials were small and complex (I believe that is what she said). She was so excited because this shows the problem is in the muscle. Since it happened after an illness she thinks that i fit the profile for some kind of autoimmune inflammatory myopathy. She also said there is a possbililty it could be a mitochondrial disease but there will be no way to tell until I get a muscle biopsy and the results are analyzed.

My doctor said that this could be one in 1000 things and that I should not google mitochondrial disease because there is absolutely no telling what this could be without the muscle biopsy. Whatever this is, I am so thankful that I am almost there to reaching an answer.

I wanted to share this with anyone who is worried about twitches: My doctor said that in ANY type of illness that wears on you, and type of muscle problem, any fatiguing illness..there is a possibility to experience muscle twitching. When muscles become fatigued they can twitch. She said it is just so rare that twitching is ALS unless you have clinical weakness observed by an EXPERIENCED doctor...and even if you do...it is STILL NOT always ALS. How encouraging to hear that!

Please pray for me that this turns out to be something treatable. I pray for you all everyday and am so thankful for this site because it gave me the right questions to ask, right places to go, and support. I will let you know the results of the biopsy!

 

[rose]

That is awesome!

It sounds like your doctor was well qualified to make this call, and did a great job of how she explained it to you.

I'm very happy for you, and hope you have some answers that will lead to effective treatment soon.

 

[crystalkk]

That's great news!

Good luck with the biopsy......