[Kris2958]

New to this site and possibility of MG diagnosis. Seeking additional information, so here goes my, hopefully, short story: Double vision started about August, but only in left eye while looking to the left. Hadn't pieced together any other symptoms yet.

In September, saw an optometrist. Stated eyes fine and referred me to a neurologist. First try and actually found a very knowledgeable/reputable one (how lucky is that in our area.

Main symptoms discussed were fatigue and double vision and headaches. Headaches have been a common 'thing' with me for a long time. Dr. watched me walk, did a 'finger test', full medical history and told me I had a 'sixth nerve palsy'. Suggested an MRI and battery of over 30 tests. He suspected MS or MG. MRI was clean/tests revealed Vit B and Vit D deficiencies.

Next step...lumbar puncture. LP was done in October. Negative results for anything. Saw my neuro early this week and referred me for a brain angiogram w/ dye to rule out aneursym. My neuro stated that if the angio came back normal, he would probably start treating me for MG after he did some sort of test on my legs that can be done in-office. Mentioned it was like an EKG (?) where they connect things to your legs and, can't remember what all was said, but I believe, measures the impulses in nerves.

I also mentioned to my neuro that 8 months ago, I felt like I had a lump in my throat and trouble swallowing, even feeling at times as though I couldn't get food or liquids down. I did see an ENT who prescribed me reflux meds and2 weeks after, it was gone. My neuro wanted to know why I didn't mention this earlier. I guess I thought it was a different issue. He stated he wasn't so sure of the reflux bec it had taken quite some time for those symptoms to go away.

Went this morning for angio and spoke with the radiologist afterwards , surprisingly, while waiting the normal 3 hours before being released. Negative for aneursym.
Tonight I'm left wondering after doing research on MG...do I have this?
Here's the rundown and I would absolutely love some feedback from those in the same situation:

1. Double vision looking to the left, sometimes not able to focus looking ahead
2. Swallowing difficulty for about 6 weeks - experienced one time 8 mos ago
3. Occasional shortness of breath after activities. Did not mention to neuro bec I smoke and assume that's the cause
4. Feel tired
5. Did have a few experiences apprx 1 month ago where I felt like I could see a word in my head, but while talking, couldn't get it out.

If this IS MG, what happens next?? How long before other symptoms appear? Will see the neuro next week for the next step. Thanks for any replies!!!!

[AnnieB3]

Hi, Kris. Welcome.

Before I try to explain some of this, please know that I am not a doctor or any kind of medical professional. You need an expert to determine all of this.

MG is all about muscle weakness that gets worse upon exertion or sustained activity and relatively better with rest or drugs. It's an autoimmune disease. Both LEMS (Lambert-Eaton Myasthenic Syndrome) and CMS (Congenital Myasthenic Syndromes) can look like MG and have similarities.

In MG, double vision (DV) goes away when you close one eye. Why? Because when muscles around the eye get weaker to varying degrees then those muscles can throw off the focus of the eyes. Closing one eye gives you a "singular" focus and no more DV.

Did they do an "upward gaze" test on you where keep your head still and look up with your eyes only? They do that to see if those eye muscles will fatigue/get weaker. It's the same thing when you look "to the side." You strain certain muscles when you either look up or to the side or down even. So, to me at least, that sounds like your eye muscles are weakening, causing double vision.

An optometrist looks only at the "eyes" and not the muscles. What you need is a neuro-ophthalmologist. They can do tests to determine if you have fatigable weakness of those muscles. In fact, you may not even realize the degree of your double vision until it is so technically pointed out.

Ptosis (toe-sis) is another word for drooping eyelids. That is common in MG.

Do you have a B12 deficiency specifically? You just said "B" def. B12 is a unique little vitamin. It's essential to every cell in the body. You may even have it from taking an antacid!!! We need acid to digest food and absorb nutrients. If food doesn't get broken down sufficiently, it can't be absorbed in the small intestine.

Smoking can cause shortness of breath, however, shortness of breath that "comes and goes," especially if it is after exertion but variable, is more indicative of muscle weakness.

A B12 deficiency, if you had that (which I had in 1997 - 99), can cause a LOT of neurological symptoms; cognitive ones too. A good neuro can figure out the difference between those symptoms and that of MG.

Did anyone run the Acetylcholine Antibody Panel (binding, modulating and blocking antibodies) or the MuSK Antibody test? Those are blood tests that can determine if you have MG. Although some people with MG don't have positive antibodies (called seronegative MG).

If you do have MG, being unable to swallow at all or being unable to breathe well are emergencies. I mean either get to the ER or call 911 emergencies. It doesn't matter if you haven't been diagnosed yet. If you have a worsening of your symptoms, you have to seek out help immediately. Do not wait for some appt.!!! MG can be life-threatening if your muscles get so weak that you can't breathe or move.

I could go on and on but I think you should see what the neuro has to say. You can go to the websites below to get more info. I really hope you can figure out what is going on.

Annie

www.myasthenia.org
www.mdausa.org

[dog lover]

Hi Kris and welcome to the group!!!
To me your symptoms do sound like MG. All of the symptoms you listed are signs of MG. I also have the swallowing difficulty you mentioned. Mine comes and goes too and feels like there is a bubble in my throat and sometimes when I'm eating it feels like it it stuck there and won't come up or go down. I am assuming since you haven't been officially diagnosed you aren't on any meds but if and when you start mestinon taking it 30 minutes before eating will help with the swallowing problem. My Neuro told me that this week and it really has made a world of difference.
I also have the some shortness of breath but more often it feels like my heart is racing trying to keep up. I am a smoker too and TOTALLY understand you being hesitant to mention that but you really should. I found out that I also have a lung disease and am not sure if it is autoimmune related or smoking related. I am trying to quit smoking right now because if it is from smoking it will improve. There are several others on this forum who are smokers too so you are certainly not alone in that. You just want to make sure it is smoking and not weakness in your chest muscles.
As for your symptoms progressing that may or may not happen. MG varies in people from mild to severe. The good news is that after 3-5 years you can usually assume it will not progress anymore than it has. If your nerve conduction test comes back positive you will most likely start taking Mestinon. Some people have excellent results and others don't. I am one of the ones who only gets slight improvement from it and am now taking Prednisone too. It has made a HUGE difference. I remember how confusing everything was while I was waiting for my diagnosis and the people in this group were incredible!!! They always answered my questions and I felt like I knew what to expect at my next appt. Please keep us posted on your progress.
Kendra

Originally Posted by Kris2958

New to this site and possibility of MG diagnosis. Seeking additional information, so here goes my, hopefully, short story: Double vision started about August, but only in left eye while looking to the left. Hadn't pieced together any other symptoms yet.

In September, saw an optometrist. Stated eyes fine and referred me to a neurologist. First try and actually found a very knowledgeable/reputable one (how lucky is that in our area.

Main symptoms discussed were fatigue and double vision and headaches. Headaches have been a common 'thing' with me for a long time. Dr. watched me walk, did a 'finger test', full medical history and told me I had a 'sixth nerve palsy'. Suggested an MRI and battery of over 30 tests. He suspected MS or MG. MRI was clean/tests revealed Vit B and Vit D deficiencies.

Next step...lumbar puncture. LP was done in October. Negative results for anything. Saw my neuro early this week and referred me for a brain angiogram w/ dye to rule out aneursym. My neuro stated that if the angio came back normal, he would probably start treating me for MG after he did some sort of test on my legs that can be done in-office. Mentioned it was like an EKG (?) where they connect things to your legs and, can't remember what all was said, but I believe, measures the impulses in nerves.

I also mentioned to my neuro that 8 months ago, I felt like I had a lump in my throat and trouble swallowing, even feeling at times as though I couldn't get food or liquids down. I did see an ENT who prescribed me reflux meds and2 weeks after, it was gone. My neuro wanted to know why I didn't mention this earlier. I guess I thought it was a different issue. He stated he wasn't so sure of the reflux bec it had taken quite some time for those symptoms to go away.

Went this morning for angio and spoke with the radiologist afterwards , surprisingly, while waiting the normal 3 hours before being released. Negative for aneursym.
Tonight I'm left wondering after doing research on MG...do I have this?
Here's the rundown and I would absolutely love some feedback from those in the same situation:

1. Double vision looking to the left, sometimes not able to focus looking ahead
2. Swallowing difficulty for about 6 weeks - experienced one time 8 mos ago
3. Occasional shortness of breath after activities. Did not mention to neuro bec I smoke and assume that's the cause
4. Feel tired
5. Did have a few experiences apprx 1 month ago where I felt like I could see a word in my head, but while talking, couldn't get it out.

If this IS MG, what happens next?? How long before other symptoms appear? Will see the neuro next week for the next step. Thanks for any replies!!!!

[suev]

Welcome Kris!

You have certainly been through a ton of tests! It is good that they are being very thorough. Did they do blood tests for specific antibodies? Like Annie said, this is a classic indicator IF you have the antibodies. I don't have them -- but I still have MG.

RE: your shortness of breath
As a former smoker, I can tell you that the feeling is different when the shortness is caused by MG. Smoker short breath is fairly repeatable. You experience the 'same' feeling every time you walk up a flight of stairs. When it's MG, it's variable. Sometimes fairly dramatic shortness of breath and other times, little or no problem.

On the word 'getting stuck'. This has been happening to me (in clusters of occurences lately). At my neuro apt. last week, I mentioned this as something new and irritating. They said this is not MG - but rather more indicative of a complex partial seizure. So, I was scheduled for an EEG and cautioned that they may need to do a video EEG for three days to capture the event (apparently difficult to dx). I'm not sure I'm buying into all this yet...but that's what learned last week.

Anyway, don't worry -- take it one day, one test at a time. And I look forward to hearing about how you are doing.

Sue

[Kris2958]

Hi Annie,

Thanks for the good info! I've kept up with all of my testing info and went to pull some of the tests run...yes, I've had the Acetylcholine (Binding Ab and Blocking Ab) and both are negative. My neuro did tell me that MG will not always show in a blood test.

On my double vision, it's the same as what you described. When I close one eye, it goes away. It's very frustrating, especially trying to drive at night, so I've tended to close eye when I do have to go out.

I haven't done a gaze test, I don't think; however, the neuro did have me look to the sides and up and down, but nothing for any long period of time. How long would someone have to gaze upwards to tell a difference? My left lid, the one I'm having trouble with, does droop...but I've had that for so long now that I never considered that to be a symptom..hmmm....

I really appreciate the information and am reading all kinds of things concerning MG here. It's very helpful and if you can think of anything else I can look out for, let me know...thx, Annie!!!

[Kris2958]

Hi Doglover!

I've only had the swallowing difficulty once. How often can it happen in MG? Does it continue to come and go frequently?

Also, on the smoking part....how can the doctor determine whether shortness of breath is related to smoking or MG? It's kind of like I've noticed this more in the past six months and then came the double vision problems. I'm not sure how to describe it...maybe almost as if I'm not getting enough air in at times.

It's hard for me to say whether or not I get weak after activities, etc, because, like everyone it seems, I'm always on the go and by the time dinner is cooked, kids are bathed, homework done, etc, I'm exhausted. I have noticed at times that I just want to sit down bec I'm tired after doing yardwork or just after I've been busy, but not sure if that's normal or not.

I'll mention the breathing issue to my neuro when I see him next Thursday, in the meantime, let me know if you can think of anything else I can look for. A big thx for replying!!!!

[Kris2958]

Hi Suev,

Like I mentioned to Annie, they did do a Acetylcholine (Binding Ab and Blocking Ab) and apparently that did come back normal. The only thing my doctor told me was that they found a Vit B12 and D deficiency, which I'm on vitamins for now.

How long have you had swallowing difficulty and does it stay with you or come and go? Mine was only that one time.

I guess what scares me the most is that I'm hearing a lot about breathing issues. Is this something that, once you begin to have them, you always will with MG? Hopefully, next Thursday I can get a more definate answer bec my neuro is going to do an in-office test on my legs...not even sure what that is..any clue???

Let me know how the swallowing problem turns out for you, too. Thx for replying!!!

[jana]

On the word 'getting stuck'. This has been happening to me (in clusters of occurences lately). At my neuro apt. last week, I mentioned this as something new and irritating. They said this is not MG - but rather more indicative of a complex partial seizure. So, I was scheduled for an EEG and cautioned that they may need to do a video EEG for three days to capture the event (apparently difficult to dx). I'm not sure I'm buying into all this yet...but that's what learned last week.

Sue, I don't know about THIS group -- but, in my other MG groups cognitive problems seem to be rather common -- especially later in the day, when fatigue sets in. Some also surmise that medications may play a role in "brain fog" -- so, I don't blame you for not "buying into all this yet"!!!

[suev]

Jana,
Thx for info. I have started a journal to log occurences (time of day, how tired, last Mesty, etc.) to see if any patterns develop. This feels different than fog. It's like a sudden complete blank where the word was in my head - but it never got to my mouth. Not even stumbling over the word or thought....just a blank blot out!

I'm fully aware of it happening (has happened). The way I get going again is to sort of force relax with a deep breath (usu. followed by a statement of extreme displeasure over what just happened!! lol). Then it takes about 30 seconds or so to 'reset' my thought and try it again.

Very bizarre.....your thoughts?

Sue

[jana]

Originally Posted by suev

Jana,
Thx for info. I have started a journal to log occurences (time of day, how tired, last Mesty, etc.) to see if any patterns develop. This feels different than fog. It's like a sudden complete blank where the word was in my head - but it never got to my mouth. Not even stumbling over the word or thought....just a blank blot out!

I'm fully aware of it happening (has happened). The way I get going again is to sort of force relax with a deep breath (usu. followed by a statement of extreme displeasure over what just happened!! lol). Then it takes about 30 seconds or so to 'reset' my thought and try it again.

Very bizarre.....your thoughts?

Sue

When some of the other MGers first started talking about this, let me tell you that I FREAKED!! I am known as the "brain" in my family -- not that I am that smart -- that is just my "role". (I'd rather be the "pretty one", but my sister has that cornered -- LOL.) I was losing my physical strength, my ability to talk, I had already lost my ability to work -- now I was going to lose my ability to THINK?!?!?!? Well, so far, mine ONLY seems related to words and names. I do "lose" them -- especially when I am tired or need another Mesty. But, I have NOT (knock wood) noticed any lag in my math or logic skills. So, I feel OK about the situation. It is INCONVENIENT -- and perturbing -- but, certainly something that is not all that uncommon with "normal" people. When I was still working, people who were NOT ill were constantly coming to me asking for names or using me as a living thesarus.

Here is a link with some info:
http://www.docguide.com/dg.nsf/Print...2569F50071AAB8