Symptom Confusion and the Need for a Timely Fix
 

I was recently diagnosed with MG (recent as in last week). I was started on Mestonin. My neuro told me to start with 30mg every 4 hours and increase to 60 if needed. The 30 didn't do anything at all so, after a couple of days, I increased to 60. I became overwhelmingly sweaty and hyper and the twitching (which had gotten worse with only 30mg) became ridiculous. I stopped taking the drug and called my neuro. He told me that people often have side effects but that I would get used to it and that I should try 45 mg instead of 60. I tried 45 but still got the side effects. Now the plot thickens. I have 2 severely herniated cervical discs that are indenting my spinal cord. Obviously, I am scheduled for surgery next month but need to get my meds straightened out since MG patients have so many problems with anasthesia. I am, therefore, on a time constraint. Aside from that, the symptoms of the pressure on my spinal cord include weakness in my arms and legs (sound familiar?) making it very difficult to tell if the Mestonin is even helping me because of the problem with my neck. To add one more difficulty, I have been having periodic panic attacks off and on for the last year or so. Now I'm so upset about the side effects of the Mestonin that I think my anxiety is exacerbating the side effects. Does anyone have any sort of advice? I'm desperate due to both my desire to start fixing the MG (as much as it can be) and the time constraints due to my impending surgery.

Thank you so much.

DeliaDee, HOW were you diagnosed with MG? Via bloodwork, EMG, SFEMG, Tensilon test, symptoms, or ????

My bloodwork is normal with the exception of RNP antibodies, which the neuro thinks is due to MG. The diagnosis was due to symptoms, repetitive nerve stim, and single fiber EMG. I had some more blood work a couple of days ago and will find out the results in 2 weeks. Everyone, including the EMG technicians, knows about my neck issues. I only found out about the discs because my neuro sent me for an MRI. Really, I don't know for certain that I have MG yet and won't feel secure in the diagnosis until the results of the final tests come in but my neuro feels "98% certain" of the diagnosis.

DeliaDee, sounds like you have a very competent neuro -- and that you most likely DO have MG -- the SFEMG and repetitive nerve stimulation along with your symptoms pretty much tell the tale.

Mestinon does tend to make one "antsy". It increases sweating -- actually increases most bodily secretions including urination. It DOES take time to get used to -- like weeks or months. I didn't up my 30 mg dose for maybe 6 months. It is one of those meds where TOO much can make you WORSE.

My two cents?? As long as you are swallowing and breathing ok, I'd just not worry too much about everything else as far as your surgery is concerned. The MGers who tend to have the most difficulty with surgery are the ones with Bulbar symptoms -- swallowing, talking, breathing difficulties. If you haven't shown any of these, yet, chances are that you will be fine. I have been told over and over that anesthesiologists know more about MG than most OTHER doctors in the hospital -- so, before your surgery -- just check and MAKE sure that yours knows what he/she is doing!!

There are lots of really, REALLY smart people in this forum -- I hope that they will pop in here and share their expertise!!

Hi, DeliaDee. Welcome.

Did the doctor explain the RNP antibodies? They are not MG antibodies.

http://www.aruplab.com/guides/ug/tests/0050470.jsp
http://emedicine.medscape.com/article/335815-overview

Do you have a rheumatologist or have you been referred to one? If not, it would be a very good idea to see one as soon as possible.

Were they able to say what caused the herniated disks?

Are you on any medications?

If you can, get copies of all of your test results. Obviously you need to have surgery if your cord is being compressed but you also need to be fully aware of any conditions you may have before surgery. That could make a difference in what drugs they use, etc.

For instance, if you have MG, using a pediatric gas to intubate instead of a muscle relaxer is a better way to go. It wears off more quickly after surgery and does not adversely affect the muscles in MG as much.

Did you notice if the 30 mg. made your muscles feel stronger? Even a small dose can make the muscles of people without MG feel stronger. Do you have ptosis (droopy eyelids)? Double vision? Have you seen a neuro-ophthalmologist? Are you short of breath too?

Mestinon can have different side effects for different people. I only had very slight sweating on the first day or two of taking it. I haven't had any side effects since and I am on 90 mg. every 3 hours. I've been taking it for nine years.

I know that panic attacks are personal but I'm wondering if you can point to an event or a drug that may have initiated them. Some drugs can bring them on or make them worse. Did you know that anger and panic can't exist in your body at the same time? Seriously, my psychologist let me in on that one. So if you can try to leave the environment you are in while you are having one, think of something that makes you angry and then, once it's gone, think of something peaceful/something you love that makes you feel safe. Try that.

I hope you get answers soon. You've got a lot going on. And, please, if you don't have a rheumatologist, get one right away.

Annie

p.s., Jana, you are really smart too, you know. And nice. And funny. Need I go on?

That's pretty much the problem. I'm having trouble talking and swallowing. My breathing is fine and my pulmonary tests came out very well. But the talking and swallowing is an issue which is why the pressure is on me. I will, of course, take your advice about the anesthesiologist. I'm one of those people who ask tons of questions and wants to know everything that's going on so that shouldn't be a problem. :)

Thank you for your support.

I just read Annie's links -- looks like you may have more than one autoimmune going on -- not all that unusual -- these things tend to run in packs.

So, you are Bulbar. Sorry to hear that, DeliaDee. Besides what Annie mentioned, your doc can get you STRONG before surgery by doing plasmapheresis or IVIG -- this is common pre-surgery treatment for Bulbar patients who are about to have thymectomies.

Welcome to the group. :)

Let me say this first... I have had many surgeries including back surgery for bad discs. And here I sit typing :)

TRY to relax, I know it is hard as we all have or are going through this. Mestinon side effects are bad sometimes but if it helps in any way it is worth it.

I see others all told you everything you need to know and remember to try to relax. Sadly I need help with that {xanax} But talking to many here has actually helped me so I don't need as many as I used to.

Once you get used to having MG and learning your limits you will be surprised how much easier things will be. We are here for support.

[QUOTE=AnnieB3;618365]I know that panic attacks are personal but I'm wondering if you can point to an event or a drug that may have initiated them. Some drugs can bring them on or make them worse. Did you know that anger and panic can't exist in your body at the same time? Seriously, my psychologist let me in on that one. So if you can try to leave the environment you are in while you are having one, think of something that makes you angry and then, once it's gone, think of something peaceful/something you love that makes you feel safe. Try that.
QUOTE]

Annie, you are right about this. I found by experimentation that the only way to make my panic go away is to get angry first. When the fear was really bad I listened to heavy metal music that felt full of anger with lyrics I could relate to (I am laughing about this now but it worked for me and I was desperate for something to help me). Once I was able to get angry, then the fear went away and then I had a chance to think positive thoughts so I could start healing.


DeliaDee, Mestinon makes me nervous if I take too much at one time. I had to adjust my dose to take smaller amounts more times throughout the day. To avoid the nervousness (and other side effects) I only take 30 mg at a time.

I hope this helps

panic attacks?
 

Thanks Annie,

could I join what you said about Jana?

this psychological explanation is very interesting. I wonder if the anger the neurologists caused me so many times, is what made it easier for me to tolerate my respiratory symptoms? so in fact they actually did me a lot of good then?

also, my concern is that those "panic attacks" may be in fact respiratory muscle weakness that has been overlooked by the neurologist. as we all (unfortantely know) this is not a "rare" occurence.



alice