MG?
 

First let me start off with my grandfather had MG. About 2 months ago I got Bell's Palsy. There were no blood tests or any other tests done. They only looked at me and said "yep Bell's palsy." I was treated and had movement back within about 1 month. I then started to develop muscle twitching over my entire body. They happen anywhere and are pretty random. They last for only a couple of seconds and move someplace else. I don't have them all of the time. I went to a neuro and again just a physical exam, and he said I was fine. I told him there was a history of MG. He didn't feel the need to any more testing. The anxeity has gotten the better of me, and now I am taking meds for that. I have had a feeling of a lump in my throat on and off for a while and even when it goes away I feel mucus in my throat. They are treating me to reflux. Just wondering if anyone was misdiagnosed with Bell's and then found out later it was MG.

So either everyone thinks I am crazy.....or this has never happened to anyone else.

I really don't know much to comment so that is when i generally don't but i do remember reading something about twitching (Fasciculations they called it) and mucus not getting cleared with ALS. I don't know how the Bell's palsy issue would fit into that or if I'm way off base. You might want to see if any of that one fits. It's not a fun one though so I hate to even mention it : (

Hope you find some answers soon. . .debra

Really????????????? i have sever anxiety about having a neuromuscular disease and you point me toward ALS. 3-5 years to live. WOOOOHOOOO! Where did you hear that mucus not clearing is an ALS sign?

Mucus is only a problem in the later stages of ALS. I m certainly not in the later stages. It is a problem because the people can't swallow anymore. God that scared the crap out of me!

i guess that is why we shouldn't comment when we really don't know much. . ..sorry.

I ended up maxing out on anxiety meds because of that for the day. I don't think I have ALS. BTW twtiches with ALS are different. They are usaaly localized and don't stop. Swallowing problems are usually accompanied by speach problems also. Just and FYI

In my experience, muscle twitching is not usually a symptom of mg unless you overdose on mestinon. My initial symptoms were muscle weakness, not twitching.

I was never diagnosed for Bell's because once I finally made it to a neurologist, I was luck to find one who kinda knew what was wrong pretty quickly. He did the blood work and I was positive for anti-bodies.

Here's hoping you find your answer soon!

Thanks....I should have mentioned I am being trested to GERD also. Which can cause mucus in the throat.

Hi, mhs, do you have a more informal name?

No one wants to be pointed towards any disease, they all suck to varying degrees. People do die of MG too, though not as a rule like with ALS. A friend of mine died of ALS, and I think we all understand how difficult it would be to have that disease. I doubt Debra meant any harm whatsoever.

When they diagnosed you with Bell's, did they do any testing? A brain MRI? Did they give you Prednisone for it? Studies have shown that a combination of Pred AND vitamin B12 do a better job of healing Bell's.

It's possible that you still have nerve damage. Yes, you could indeed have MG. Bell's has many causes and I have always found it interesting that an immunosuppressant can make it better. I have to wonder if the cause of it can be autoimmune. Sublingual B12 will help greatly since it goes to work right away in the bloodstream.

Do you mind me asking how old you are? I really hate when doctors treat for "reflux." Our stomachs age as we age. We lose stomach acid. And antacids/acid blockers reduce your ability to break down food and absorb nutrients like B12, calcium, iron and protein. Besides, there are a lot of causes of reflux, including celiac disease. And there are a LOT of causes of increased mucous, including undiagnosed food allergies, respiratory allergies, dehydration, etc. To me, it sounds like these doctors are not trying to figure out what is wrong but throwing drugs at your symptoms. Have you expressed that you are anxious about your symptoms? Yes, that is TOTALLY a normal thing to do!!! But doctors can sometimes jump from that to "it's all anxiety." Which is utterly absurd.

Mucous is normal. The consistency (thin to thick) or the frequency is what is not. Inflammatory foods like diary, beef and eggs can cause an increase in it. With bulbar symptoms of MG, you can have symptoms ranging from feeling like your tongue is thick to not being able to swallow well to mucous staying in the throat because of not being able to swallow well and all sorts of other symptoms. So while mucous alone is not an MG symptom, the inability to clear it or move it is.

Are you on an anxiety medication? Is it Paxil? Paxil has been known to cause twitches, either going up or down in dose. Check any drugs you are on for side effects. Look for twitching on the list. You have to be thorough with any new health problem and drugs do indeed cause problems.

What MG is all about is muscle weakness that gets worse upon activity and better with rest. When muscles get weak, they do indeed twitch or cramp or spasm. It is a "secondary" symptom of anyone with a neuromuscular disease like MG.

Do you have ptosis (drooping eyelids)? Have you looked at your face at the beginning of the day and then later in the day or after an activity? Do you have any shortness of breath? Any trouble with your arms while doing simple things like dishes? Any trouble walking up stairs? Does your neck get weak and it feels like it's hard to hold your head up? Those are some of the signs of MG.

This is not always the case but MG is a "head and down" disease while ALS is a "foot and up" one. Again, there are exceptions to every rule! Guillain-Barre usually starts in the lower extremities too.

You may want to see an ENT doctor to assess any swallowing issues. A neuro-ophthalmologist (not a regular optometrist) can assess any ptosis you may have. If you want to be assessed for MG, your internist can run the antibody tests: AChR antibody panel (binding, modulating and blocking antibodies) and the MuSK antibody test. They can come back negative and you can still have MG. You can see an MG expert neuro to assess you for it.

I hope that info helps. I know how scary it can be to not know what's going on with your body. Try to relax as much as you can. My psychologist told me that anger and panic attacks can not exist at the same time in the same body. So, if you can, try to get angry if you feel any panic coming on. Seriously, it works. I don't have an anxiety disorder but PTSD from medical traumas.

Hang in there. Write ALL of your symptoms down and keep a diary!! You may begin to notice a pattern. Good luck.

Annie