Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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patmeteor 04/07/2013

I'm feeling crummy this morning and grumpy because I'm feeling too crummy to go to church. Last Tuesday, I ran out of Allegra and took a Zyrtec (cetirizine) instead. I had a miserable day, felt tired and weak and just generally lousy. My husband got me some more Allegra so I only took a Zyrtec one day, but somehow that day started a downhill slide into bronchitis. Has anyone else had problems with cetirizine? For what it's worth, I only take Mestinon for my MG--60mg about every four hours.

On a totally different note, one day later in the week I had the sensation that the floor in the hallway at work was uneven as I was walking--slightly raised in some places that I put down a foot, slightly lowered in others. I wonder what I looked like--was I was even walking straight! It could have been a visual thing, since the floor is carpeted with carpet squares with alternating orientations, but I think it was more likely something going on with the weakness in my hips. Is it just me, or has anyone else run into this?

Thanks and blessings to all of you!
Pat

deleted_user 04/08/2013

When I first had MG (last May), and started taking Mestinon, sometimes it seemed like my balance was gone--I would sort of lurch to the side and grab for some support--a little like being on a ship in rough waters. It went away after a few weeks. I didn't remember it until I read your post. Never was quite sure if it was the Mestinon or something else. I had some difficulty getting used to Mestinon, and had to take a lot for the first 5 months, just to be somewhat functional.

I also started prednisone about 2 weeks after diagnosis--when the neurologist realized I had more than just eye and head symptoms--that I had general MG rather than ocular (eyes) or bulblar (head). The prednisone worked to put MG into remission--didn't need Mestinon and didn't have MG symptoms anymore. Have been tapering prednisone now for 5 months to get to the lowest dose, as it has many problems too. Good Luck!

deleted_user 04/08/2013

I meant bulbar not bulblar and the meaning
"Bulbar Myasthenia usually presents as difficulty in speaking, swallowing, respiratory wheezing and nasal regurgitation"
-- what I think of as head symptoms--throat and face

deleted_user 04/08/2013

Same here, Russ. I could never tell if it was constant use of Mestinon or higher doses of prednisone making me feel off balance. It occurred alongside the brain fog that I'm sure was from prednisone. So difficult to sort out symptoms from side effects, not to mention side effects from one drug from another.

Hope you are feeling better, Pat.

Joe-Fodor 04/08/2013

Dear Pat:
Yes -- the ground seems to move sometimes! I am always thinking it is an earthquake, but nobody else notices. Then, when we actually had an earthquake, I thought it was just my MG symptoms. ~joe

patmeteor 04/08/2013

Last Friday it definitely felt like I was on a ship, but thankfully the waves weren't too big, Russ :) And Joe, I like the earthquake analogy. I have a friend that claims to be able to feel some of the really small quakes that go on quite frequently here in the Central Coast of California. I could just blame it on suddenly becoming sensitive to these small quakes!

Thankfully my breathing problems are due to asthma not MG, at least if you rely on how far you can count in one breath as an indicator. At least at this point, my MG seems limited to hip muscles and my left eye, although at times my arms seem a bit weak. My pulmonologist phoned in antibiotics today, so hopefully that will turn around the bronchitis in a few days. Now if I can just avoid the lingering cough....

Thanks for the good wishes and prayers!
Pat

Kimber71 04/08/2013

Recently my allergies were bothering me and I bought some Sudafed. When I called the neuro about some symptoms the nurse told me that almost all of the allergy meds were on our contraindicated list.
Be careful about what you take it may accidentally throw you for a loop.

patmeteor 04/08/2013

Thanks, Kimber. I guess I learned that one the hard way! I used to take Zyrtec and didn't have any problems with it, but that was in my pre-MG days. Since my MG symptoms are pretty mild, all things considered, I thought I didn't need to be quite as careful about medications. And now I know better! My legs have never felt that weak.

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