Hi NeuroTalk. I originally wrote this post somewhere else on the site, but one of your kind posters said I should redirect this to the myasthenia gravis forum (thanks mrsD - can we refer to a poster in a thread?). I have related to so many of your ordeals and I felt like it was time for me to post. I'll make this as short as possible. I entered the hospital in March when I had a 'Peripheral Neuropathy' in my feet on March 30th, 2012. I was told that it was either due to Guillain Barre or Disulfiram Toxicity. Due to the EMG results my Neurologist felt it was most likely due to Disulfiram Toxicity and I was not treated. Most of my symptoms went away (minus the movement in my toes) and I was able to climb a 15,000 foot mountain in October, I'm 30 and in fairly decent shape.

Around Thanksgiving all of my symptoms came back, but worse. I have weakness all over. I am exhausted. But recently I have noticed I can't move my forehead voluntarily, it does move involuntarily but very weakly. It's so strange. The thing that I want to know if anyone can relate to is my breathing issues. At first I was struggling to get a full breath. Now I have these throat spasms, they sort of exist below my chin and in my throat. It isn't very bad when I am at rest, I only really notice it when I am walking or talking, but it is really frustrating. I haven't found anything on the message boards about this and was wondering if anyone else has experienced this. My voice also sort of changes when I'm talking with the spasms... it sounds like I drank a ton of milk or something.

Other symptoms I have experienced, I have found I have a hard time biting into a sandwich. Not a small PB&J type sandwich, but a sub or something. Meat is hard to chew. No swallowing problems. I have not had any pain issues except for two strange ones. The first one is occasionally (and always after I fly) my calves hurt and get hard - so hard that it was noticeable to my Neurologist. Secondly I have nerve pain in my toes - it's strange, like regular touch is fine, but soft touch drives me crazy. I'm sensitive to temperature.

A few more symptoms. Vision - ugh. I don't know if I have drooping eyelids. I believe I do. They're heavy to hold up, but I've not spoken to a doctor about them. I have a really hard time moving my eyes to the left or up. I get double vision to the left and down. I am always in a daze and my vision has absolutely changed, the type on my computer is really big and I struggle to read books (I'm a big reader). I'm considering getting a Kindle and I swore to myself I'd never give in to an electronic reading device, so I sort of hate myself for it...

Anyway... I am currently undiagnosed and am working with a new Neurological team. I was prescribed Valium for the spasms but it doesn't really help. I start seeing the new Neurologist this week, but I was hoping someone else may be able to relate.

Thanks for listening. I wish everyone who reads this all the best, I know that if you are on this board you are struggling as I am.

Hi Hankster,

Glad you found this forum. I have learned so very much from it. I'm not sure I have the exact same thing going on, but I do have times when I feel like my throat is closing. It feels like pressure, and at that time I will not drink or eat anything because I know I will get choked.

I cannot carry on a long conversation without running out of breath, which makes everything worst....but maybe not for my family, because I have to shut up.

I also get tired when I chew alot. Mainly meat. I don't eat alot of meat, except chicken, but my jaw still becomes fatigued.

For me, this has been a hard road to travel. It seems everyday it is something new, and my body is always betraying me.

Especially when I live with my 2 sisters, who are both sick as well. I am treated like there is nothing wrong with me....which is disheartening

Anyway, I am learning, and hopefully your new set of doctors will really care enough to help you.

Good Luck to you in your journey. There are awesome people on here. I am sure someone will get back to you real soon with much more knowledge than myself....


Deb

Hi, Hankster1. Welcome to the forum! And thanks, Mrs. D, for helping. Yes, you can refer to a poster, especially when that poster is a Moderator!

I hope your neurologists will do the basic MG tests for you. So far, there are 2 MG antibody tests. The AChR binding and modulating antibodies and the MuSK antibody. You can still have MG and not have those be positive, however.

I don't know if you have MG but the hallmark of it is fatigable muscle weakness that gets worse with activity and better (relatively) with rest. What you're describing sounds a lot like MG.

I don't mean to pry but were you given Disulfiram to withdraw from alcohol? The reason I'm asking is that I was wondering what effect alcohol had on you and how long after you started taking the drug did you get these symptoms? How long have you been off of the drug?

MG doesn't normally come with spasms. Has anyone tested your vitamin B12 or D levels? If not, please do because deficiencies of both are very common. Have you ever had frostbite of your toes?

It is possible to have more than one thing going on at once, so keep that in mind while you're being evaluated.

A clinical exam should be revealing with MG and diagnosis is based on a clinical exam and then backed up with testing. There's a more specific kind of EMG called a SFEMG that they often do with people suspected of MG. I am guessing that they did your EMG on the lower part of your body, since Guillain-Barre is a feet and up disease. MG is considered a head and down disease. I know, that sounds odd and it's not always that way. But many MGers get symptoms of neck weakness, ptosis, jaw weakness (like while eating harder to eat foods), etc. first.

If you have an ophthalmologist, you can ask them to be referred to a neuro-ophthalmologist for evaluation of ptosis. They have specific ways of testing for MG and looking for double vision and fatigable ptosis.

Don't ever hate yourself. I don't necessarily like electronic devices either but they are useful.

Valium can be very bad for someone who has MG. Do you have any symptoms of being short of breath? Obviously if you can climb a mountain than you might not. But if you have MG, please be cautious of overdoing things. With MG, the more you do, the worse you can get. If you ever feel like you can't swallow, are really short of breath or generally weak, you should really dial 911. Since you aren't diagnosed yet, and IF you have MG, those symptoms can be indicative of the condition worsening rapidly. So, you'd have to get help rapidly.

I hope you have great doctors who can figure all of this out. Sometimes it does take seeing a couple of them to know what's going on. Keep asking questions and let us know if we can help. People here are fantastic!

Annie

Thank you everyone for your kind replies. I am actually going to see a Rheumatologist tomorrow for the first time, so I will ask her to do the 2 MG antibody tests. I also see a new Neurologist on Tuesday, so I have a lot to think about in regards to what I am going to ask her. I believe they did some tests for MG on me when they did my EMG's because they would do multiple stimulations on the same parts of my leg... but I am not entirely sure, I'm just now learning about MG. Do you know of any other good questions I could ask a Rheumatologist or Neurologist regarding MG?

I was given the Antabuse as a form of Alcohol treatment. It's not prying too much. I was taken off of it when I entered the hospital in March 2012. I was on it for about a year, give or take. Initially a low dose and then increased. I was rediagnosed a couple of weeks ago with Disulfiram Toxicity due to the way my EMG results looked, but I spoke with a Disulfiram Toxicity specialist on the phone and he said it was extremely unlikely for it to go away and come back - and even for someone to be dealing with it for 9 months.

I'm not totally sure about EMG results, but mine did show a slight Demyelination and my Neurologist said that she was surprised that the Myelin Sheath that surrounds my nerves were affected. She wanted to do a nerve biopsy and start me on IVIg, but neither of those have happened, hence the new Neurologist. After that she was sort of weighing between Disulfiram Toxicity and CIDP... my EMG did look like Disulfiram Toxicity. Again, no idea what that means. I feel that all of my other symptoms have been all but overlooked.

Starting December 27th I became short of breath. I went in the hospital for the first time for it on December 30th. Had a blood gas test, all was fine. Was discharged. Went back in the ER about a week and a half ago b/c the breathing had not improved and I kept nearly passing out (would get covered with sweat but wouldn't actually pass out). Was again discharged. Finally I had the throat spasms and went to a new hospital, hence the new Neurologist. This is when I was prescribed w/ the Valium, until I could get in to see the Neurologist on Tuesday.

I have had my B12 and D levels checked, I've had so many blood tests and I'm the spot of health. I've never had frostbite. I did hear the Neurologist say something about neck weakness.

I have had 3 different Neuro-Op appts and it's just been such a waste of my time. This is the one thing I think I'm most jaded about. Maybe I need to find a new Neuro-Op or something.

One other strange thing that does happen (and I'm only bringing it up because it happened this morning) is I tend to have an influx of symptoms during that time of the month - I'm female. This morning I woke up and I was having really strange vision problems, my eyes feel swollen, still can't figure out what the problem is... and then I realized it was my period. Each time my feet have stopped working has been on the day of my cycle. Each big episode I have is on the first day of my cycle. Has anyone else experienced this? I'm sorry to all the guys out there...

I suppose my main question is what should I ask my Rheumatologist tomorrow and my Neurologist on Tuesday? I am beyond appreciative to your help and I hope someday I will be able to pay this favor forward to someone else on this forum.

To dewcole... have you ever received any sort of treatment? Has anything helped your symptoms?

Thank you.

I wonder..... do you have any swelling of the hands/feet, lips?
Comes and goes?

Do you get spells of stomachaches, vomiting, diarrhea, and then suddenly better?

Joint pain, red skin (no pimples, but just flushed or red)?

Hi mrsD - nice to hear from you again. I have never had any swelling of my hands feet or lips. I do notice that when I get out of the shower though that my feet are bright red. Strangely enough I had this unusual spell of diarrhea about 2 weeks ago. It lasted for about 24 hours and then just completely went away. It was totally unexplainable, like a flu but I had no other symptoms. I almost thought I could have thrown up but it was just diarrhea. I thought it was a flu or food poisoning. Do you think it could have been something different?

The only joint pain I have is in my knees and hips and it happens before a flare up. Once my other symptoms start happening the knee and hip pain goes away. That's actually why I went to a doctor in the first place way back in February - for really bad hip pain. I then went to get Physical Therapy for that. And it never helped. It happened again this time, knee and hip pain. The pain is now sort of a tickling numbness.

What do you think?

mrsD - I have these what are thinking the problem is? As you know I have nueropathy also. The only thing above I don't have is lip swelling and my joint pain is minimal. I'm curious. Thanks!

I am new here. I have had strange neuro symptoms for over a year. It began with neck and throat spasticity, mostly at night. I attributed it to stress and anxiety (which I have had my share over the year). The spasms happened just below my chin also. It is frightening because I feel as if my throat is closing. I also had difficulty swallowing. Over the next few months I began having other intermittent symtoms. Arm weakness, occassional tremors and vision. My eyes will ache and i have blurred vision when I look down. It also feels like nystagmus (eye jumping).

I have periods of severe fatigue, arm muscle weakness and muscle jerking. My arms will sometimes just involuntarily jerk.I have had tingling in both legs, but no weakness. I also have speech difficulties in that I struggle to get the words out. So, I am a healthcare provider and I have tried to diagnose myself to no avail, which exacerbates the anxiety. This viscous circle of 'did the chicken come before the egg" scenario. I finally saw a neurologist and had an MRI. I have an appt next week for evoked potential testing and nerve conduction studies. My neuro called me and said the radiologist doesn't really think MS ( which is what we were thinking), but I do have herniated cervical disc with spinal cord compression.

I don't want a diagnosis of either one, but i'm not convinced my symptoms are not MS also. Very frustrated and wanting answers. The worst symptom so far is the throat spasm and problem swallowing. It causes panic with me.