It's not a trust issue. It's a diagnostic one.

It's great that you have a neuro who you can trust! Many of us don't.

Doctors aren't perfect. They make mistakes, as all of us do. That's why it's so important to question everything. And to have the right specialist (or a horde of them) to assess any new symptoms.

Average is not necessarily your average, just as you said! The body can change from month to month and year to year. It might be time for a redo of those breathing tests. Ask for MIP and MEP as well, which are specific to any neuromuscular disease.

Aren't you worried about living near the New Madrid? I don't think I could handle that constant "what if!" :cool:

I'm sure that you'll have good care. Ask your neuro for referrals.

Annie

I see neuromuscular specialist at Wash U. They tried to make my appts once a year and I said I wanted every six months. They said fine. They also have autonomic neuropathy testing at Wash U that you should ask to have done. It does seem like you should see a rheumatologist.

I am definitely asking for every 6 months after this episode. I am finally getting some relief. I have been taking 30 mg of mestinon every morning for the past 3 days. I may try to take a 15 mg dose tomorrow afternoon in addition to the 30 in the morning. Doc wants me to try two 60's eventually.

My blood pressure stays around 110/70 until the mestinon wears off. Then, it dips down again. So it definitely helps that.

The strangest thing. I haven't had any "esophageal spasms" since Tuesday. This doesn't seem right. Shouldn't the mestinon make them worse? Who knows if they are really spasms anyway. I won't see a doc to confirm this until August. But it is so nice to not have to fight food to go down every time I eat.

Well, Mestinon wouldn't make them worse if you have MG!

Hi. I was a runner as well pre-MG diagnosis. Same weight and height. I was diagnosed with Ocular MG in June 2015. My neuro-opthalmologist put me on Mestinon in September 2015 for double vision and eye fatigue in September 2015. He wanted me to start at 60mg 4x daily and bump up to 120mg over about 2 months. Hahaha... NO. I know my own body as well and that was TOO much. I instead started with 30mg (half tablet). This was a good starting dose for me. I had mild side effects for about 5 months - similar to drinking too much coffee. I also HAVE to take it with at least a small meal otherwise I get stomach upset. In May this year, I got my generalized MG dx. I now take a half tablet for my 1st and 4th dose and 3/4 table for my 2nd and 3rd. Sometimes I have to take a 3/4 dose to start the day, but not often.

When I returned for my follow-up appointment with my neuro-opthalmologist several months after starting the Mestinon, I told him that I had adjusted the medication to suit my symptoms and provide me the best benefit. He replied he normally would be upset with a patient doing this, but in the case of Mestinon & MG, it ("titration") was an appropriate course of action to take because each person with MG is different and responds differently to medications.

You could try starting with a half pill (30mg). If you have more than just mild side effects, try a 1/4 pill. If that doesn't do anything, try a half pill. I hope the Mestinon helps you. It has made a difference for me, but unless my upcoming thymectomy is a smashing success, my running days are over. The loss of this, unlike the Mestinon, has been a hard pill to swallow.

Mine do this randomly. It IS awful!! I have to physically push my feet on the floor to get them to unlock. I also have muscle cramping occasionally, but eating bananas, real maple syrup (tablespoon), or drinking coconut water seems to help. Also, I discovered that if I pull my legs up slightly when I'm resting or sleeping, I don't get charlie horse cramps. I can feel them coming on and this works every time. Stretching out guarantees a severe cramp.

As others have said, even if you don't have MG, WATCH OUT FOR THE HEAT!

update
 

I hate to drag this thread back up. But I wanted to touch base in case anyone else has had similar issues.

I feel almost 100% certain that my issue is not MG related. I am almost certain I have silent reflux. This past summer was horrible to say the least. I was so stressed out over not being able to swallow correctly and having difficulty getting a deep breath that I had to just walk away from online forums. Unfortunately, my doctors weren't much help either. I honestly thought I was going to die and no one would know why. My weight got scary low and my blood pressure was 80/50 most days.

My mother in law came over one night and she suggested that I try Nexium for the chest pain. I tried it for 3 days before I noticed anything, but on day 3 I felt somewhat better. Then, I started looking up gerd on my own. I had a scope in June and it showed that my esophagus was fine. So, docs said no reflux. They were wrong. It got to where I couldn't speak without pain and tightening in my throat.

I researched and found that I have all symptoms of silent reflux: trouble swallowing, breathing, terrible sore throat, nighttime cough, etc. ENT said my larynx was red and irritated at his exam. Then, he said silent reflux is hard to treat and sent me on my way with no help, but directions to come back for follow up visit in 6 weeks.

None of my docs would acknowledge this. So, I found a treatment regimen online and began self treatment (2 nexiums/day, gaviscon every time I eat and pepcid at bedtime). I took the first deep breath I had had in 4 months about a week after all the meds.

Finally found a gastro who prescribed Protonix for the next 6 months. But I can tell he's not convinced I need it because I don't "look" like a reflux patient. I am taking it and doing better. Still not 100% but I can run at a slow pace for up to 4 miles now and get a deep breath just fine. I am not pain free, but I am much, much better. My energy is soooo much better than it was. Not even comparable.

Very frustrated at how long I have suffered. Not blaming my neuro, but I told him last Oct that I was having difficulty swallowing. His response: it's not a symptom of sfn (my current dx).

I still carry the mestinon in my purse for those days that I am lagging. But I am wary of taking it knowing that my issues probably all stem from silent reflux.

You are overmedicating on the antacid drugs. And they don't come without risk.

You will now be open for deficiencies of B12, D, albumin, calcium, and iron, to name a few.

Also, you will not have as much good bacteria in your body due to no stomach acid. If you are immunosuppressed, your infection risk goes up as well.

If you don't digest your food well enough, you can get dumping into the small intestines of undigested food, which can lead to reactive hypoglycemia.

This can all lead to a leaky gut, which can lead to allergies and even more AIs.

I'm a total downer today! But you need to be aware of what this self-medicating can do.

Did you know that Mestinon increases acetylcholine, which increases stomach acid? So maybe you aren't technically someone with primary reflux/esophageal issues, but someone with secondary ones due to Mestinon.

Some things to think about.

Annie

Trust me, I am extremely wary of taking antacids. Especially since I have sfn. I am taking b12, slow release magnesium, and calcium to try to offset the protonix. I am also hoping to slowly come off of the antacids. But I am quite sure I have/had silent reflux. To the point, I am trying to find a doc in my state who treats it. Not having much luck there.

Something was truly wrong during the summer months. It was awful. I burped nonstop. It was insane. On top of that, I would wake up during the night gasping for air. I was afraid to go to sleep because I was afraid I would stop breathing. The worse part was the terrible pain in my chest and the inability to get a good breath. It is all so much better now. If I can find a doc in Arkansas, I hope to get surgery and fix the problem so I can quit meds. But I am not having any luck.

Today, I have only had protonix. I haven't needed gaviscon or anything else. I am being extremely careful with what goes in my mouth. I drink only water and I eat low fat, low acid foods.

My neuro appointment is coming up in October. Looking forward to putting some fears to rest. But I still feel pretty certain this is reflux.

How old are you?

The problem is that the symptoms of not enough and too much acid are the same. Gastritis is often caused by not enough stomach acid. I know, because that's what was going on with me for years.

The way they push antacids is nearly criminal. Most people over the age of 40 are losing their stomach acid. Only about 5% of the population has too much.

Did you ever try taking Betaine HCL, a mild acid made from sugar beets, to see if that helped the digestive issues?

Antacids may work for a while, but if symptoms come back, consider that it might be a case of not enough.

Take care,

Annie