Hi: I wanted to introduce myself. I am 63 and have had fibromyalgia for 20 plus years. About 5 years ago I started having swallowing problems. I saw my doctor who ordered a barium swallow. It did show something was amiss so the doctor sent me to a GI doctor who did a EGD, but he couldn't find any reason for the problem. So I sucked it up.

Two years ago I started having problems with my gait and weakness in legs and arms, trouble going up stairs and getting off the sofa. The doctor ordered xrays and sent me to PT. Didn't help, so off to the orthopedist I went. He ordered MRI's of lumbar and cervical spines. According to the MRI's I had normal changes for a 60 yr old woman. So he suggested I go to a neuro.

Off to the neuro. MRI of brain done alone with nerve conduction studies. MRI ok, nerve conduction study showed some problems, but she said it was just my firbromyalgia. She also ran labs on vitamins, they were all normal. I take b12 sublingual twice a week and take Vit D regularly.

A year ago my voice started changing, it would get hoarse after just talking for a few minutes, the swallowing problem was getting worse and my fatigue was really bad. I was usually in bed by 8pm exhausted. Then 6 months ago I started having shortness of breath. Back to the doctor. He did a chest xray and it showed a shadow, so a chest CT was done and a PFT. CT came back with emphysema, but the PFT showed a restriction. I wanted a referral to a pulmonary doc, my PCP said you have emphysema, get over it.

I never smoked, my parents did, but I would not accept that diagnosis and wanted a second opinion. So, I went to UCLA and saw their best pulmonary guy. The doctor told me it is not emphysema. He did a complete assessment and believes it is MG. I have a more advanced swallowing test scheduled for Friday 6/30 and another PFT on Monday and then I see him right after the PFT that same day.

My dad died of ALS, so I am aware of neuro muscular disease, plus been an RN for 30 years. I know that something isn't right with my body and it is not my fibromyalgia.

When I see the pulmonary doctor on Monday I am hoping he will run the AChR test before he sends me to neuro doctor. It is frustrating that I may have had this over 5 years ago and no one took the time to figure it out. Unfortunately I didn't even really know much about MG until now.

This past week has been really hot here in So California and I could barely function. Had to use my cane a lot to get around.

Thanks for listening and I am so glad I found this group. I will let you know what happens next week with the pulmonary doctor.

Kay

Hi Kay

Welcome to NeuroTalk .

I am sure that the other members who contribute regularly to the MG form will be able to offer you helpful thoughts.

All the best.

Hello Kay: Welcome to NeuroTalk. I trust you will find the time you spend here to be of benefit. Best wishes on your upcoming appointments.

Be sure to explore the sticky threads (on MG forum main page above the thread list) & use the Advanced Search function for specific things you want to find:

https://www.neurotalk.org/search.php

Lots of info in past posts...

Hi, Kay! This is a great forum. People here are very supportive and knowledgeable.

I'm sorry that your Dad died of ALS. I had a friend who died of the disease. ALS is not a very forgiving illness.

MG is one of those diseases that is easy to diagnose—once it is thought of! The symptoms you describe sound like the typical fatigable weakness that MGers have. I hope the swallow test went okay today.

I'm glad you sought out a 2nd opinion! You have emphysema, so get over it?! OMG. What an awful thing to say to a patient! The restrictive pattern of breathing that MGers have is pretty obvious.

I'm sure the pulmonologist ordered MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) tests. Make sure that you ask for ALL of the numbers to be printed out. They often only show the highest one. Since MIP and MEP can progressively become worse when MG is bad, having all of the numbers is crucial. For other "static" neuromuscular diseases, that isn't as important. You would probably be able to be given those stats the day of the test.

You may not know that those PFTs are exhausting for someone with MG. Try to schedule time for a nap afterward. I'm not kidding!

Geez, I hope you haven't had MG for 20 years. There are MG patients who were diagnosed with fibromyalgia and actually had MG. I hope they have checked out your thyroid as well.

I have both a cane and a walker. There are times when either one of those comes in handy. I'm glad you have a cane to assist you. Kind of rough, though, that our arms become weak easily as well! I tend to have my chest wall muscles become weak when I do too much, and that is when a walker is necessary. That doesn't happen a lot. But the summer months make MG so much worse.

Yes, please do take it very easy and try not to be out in the hot weather. Cool down quickly if you do. And then rest.

So many people don't think of MG; even nurses! You sound very methodical in your approach and your persistence may have saved you from having a MG crisis. Good for you!!!

Did you get the copies of all tests, including a CD of the chest CT? If not, make sure you obtain all copies for your records.

If you want some more information, go to Home or Muscular Dystrophy Association MG has a high learning curve. There are drugs that can make MG worse, as well as heat, stress, infections, lack of sleep, etc.

If you have MG, give yourself some time to adjust to the disease. And, please, go over all of the treatment options thoroughly and what the impacts might be on you, now and in the future. Neuros often have an algorithm they follow. That does not necessarily mean any treatment plan is right for you.

MG is not as difficult to live with as it once was (thus the "gravis" part of the term). Many people can still work and live relatively normal lives. Yes, there are those of us who have it worse off. But attitude is everything, as is adapting one's life to the new reality. So, please, don't be too stressed out over all of this (not that you would be). Being diagnosed with a new illness is overwhelming, no matter how informed and confident a person is.

I hope you will have answers next week! Please let us know if you have any more questions! People here are just amazing!!


Annie

Thank you guys for the responses.

My swallow test shows a moderate size mass in my esophagus. It appears to be benign. They are referring me to a GI doctor. The speech pathologists said my muscles look ok and move the barium down as it should, but the mass is causing my dysphagia.

One step at a time.

My first PFT in March showed restriction, so we will see how I do on Monday. I see the pulmonary doctor right after the test.

Dear GrandmaKay,

I'm sorry to hear that a mass is causing your dysphagia. I'm sending lots of caring thoughts your way as you go through more testing, and you and the doctors figure out what is next.

Also, best wishes with the PFT testing. I'm glad you can see the doctor right away after the test, and you don't have to wait.

Thinking of you,
Erin

Kay, I'm sorry you have a mass in your esophagus, but I'm glad they think it's benign. Make sure they look at the chest CT again. Get a CD of that or the original films. What if that mass was on the CT?!

How'd the PFTs go?

Annie