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...
The last couple weeks I have gotten way worse.
Before I could at least work a few hours in the morning, now I'm house bound. Just standing at the counter doing the dishes tires me out now.
I feel short of breath, very heavy in the chest under my breast bone. Walking up the stairs is not fun.
My dizziness is either getting worse or my Betahistine is not working as well as it did a couple months ago.
My face & eyes are so sore.
I don't see the Neurologist for 2 more weeks yet. This waiting for diagnosis is killing me. I feel like I'm slowly dying.
Question : Is this wait for diagnosis doing damage to me? Like the longer they take to figure it out, damage to me will never be treatable?
Connie
Before I could at least work a few hours in the morning, now I'm house bound. Just standing at the counter doing the dishes tires me out now.
I feel short of breath, very heavy in the chest under my breast bone. Walking up the stairs is not fun.
My dizziness is either getting worse or my Betahistine is not working as well as it did a couple months ago.
My face & eyes are so sore.
I don't see the Neurologist for 2 more weeks yet. This waiting for diagnosis is killing me. I feel like I'm slowly dying.
Question : Is this wait for diagnosis doing damage to me? Like the longer they take to figure it out, damage to me will never be treatable?
Connie
Even if the Dx is MG the first line med, Mestinon, does not really treat the disease directly, it basically works by helping relieving the symptoms of muscular weakness. Many with MG never move onto meds that are classified as immune suppressants. These meds like Imuran, Cellcept or Prednisone actually reduce the disease activity my gently suppressing the immune system.
Hang in there Connie and take some comfort that waiting a bit will not cause you physical harm.
Joe
First of all,,,,,stop doing the steps. They take a lot out of us.
I have to really budget my step use.
I never start the day going up my steps.
I try to go upstairs only at night so then I rest.
You may have to sleep up stairs so be sure to only go up to sleep.
You really ought to go to hospital.
When you check in you tell them you are pretty sure you have mg and are having breathing issues.
Be sure to go to the hospital of the neuro that you want.
When you go to er they assign a neuro to you.
I only felt my breathing and when I went in they said I got there just in time.
A crisis is not fun.
This is life threatening. I was on ventilator for 3 weeks.
2 weeks is too long in your condition.
So sorry you're feeling so crummy. I'm with the rest of the folks here, either call your neurologist, explain your symptoms and say you need an appointment first thing tomorrow, or even better, get checked out at ER right away.
Last Thursday, I was having the similar weariness, and awful shortness of breath. I called and got into my neuro right away. As soon as she saw my labored breathing, and pale, clammy skin, she called 911 and I was ambulanced to the ER. Do remember that even though the neuro can examine you, they are not equipped in the office setting to manage your issues, so the ER is the better bet.
I'm praying that things go okay for you. Take all the precautions you can, and I'll be praying for you.
Tamara
I understand how you feel and others here do too. Most of us have been there in the same type of predicament. I am in the same now...in between testing and getting a follow up visit. Every things I do impacts my weakness and mestinon is not enough to counter it.
All advice given here is right spot on. For now limit activity. I would suggest anyone with steps and MG eventually get a stair elevator. Steps will never be your friend. Right now I am letting a lot go by undone and trying to get help with driving to appointments which has become problematic. I just found out we live outside any area for in home health care for my husband who has cancer. We will have to hire help for some things and just cut way back for now.
Many of us have gone years without diagnoses and have learned that not doing things or pacing is the only solution until help gets to us. Right now pacing no longer works for me so some things I just cannot do. Unloading a dish washer really sets me back. Gardening is not doable right now. I am struggling with driving so thinking of hiring someone to drive including to my next follow up neuro appointment which is a 14 hour round trip. Any activity and my head droops, eyelids almost close, voice goes and swallowing is a problem. It also effects my breathing....so to get through to my appointment which is one long month away I simply have to let things go undone.
Once on tx I know I will do better and I will be able to do more myself. If you can move your appointment up try to make that happen as Jacki stated. Mine is moved up. It was three months out.
If is so frustrating to have to wait and of course if things tip the wrong way I will go to the ER.
I hope you can move the appointment closer and pare back on activity. A sink full of dishes is better then having your symptoms sky rocket. Will hope you can get some help with tasks until you get into dr. and also caution you to go to the ER if breathing becomes problematic. Let us know how it all goes....Hugs, Marie
Don't hesitate to see your Primary physician.
If things get worse?
And your Neuro can't see you, in a shorter time-frame?
Consider the ER, as well.
If you go to the ER? Make sure both the Neuro and the Primary know that you are going.
And request that they attend you, in the hospital.
Jacki - No I have not been given any Mestinon. Currently the only medications I'm on is Betahistine that my family doctor gave me for dizziness and the ENT doctor prescribed some anxiety meds for me.
Joe - You are right, emotions are crazy right now. I have never had a panic attack in my life until recently, hence why I was given some anxiety meds.
Ann - I have lived on my couch for the last 2 weeks now except at night I climb the stairs to my bedroom. I don't like the feeling I get, scares me to climb them. Also my knees make popping noises when I climb them too. Another new symptom , like I need any more ! LOL
Tam - This appt on the 1st of October will be my first time to see the Neurologist so I'm scared to call and demand to be seen quicker cause I don't want to tick the guy off before he even sees me. From the reviews I've read on the internet, he's not very well liked apparently.
Marie - I was sent to the Cardiologist a couple months ago and I did the 24 hour heart monitor as well as the treadmill thing. He gave me a clean bill of health when it comes to my heart. I have not been sent to a Pulmonologist yet.
Snow - My next appt to see my family doctor is Sept 30th but I may call today and see if I can get in tomorrow.
It is so frustrating to not be able to do anything. Sitting on the couch all day watching tv stinx. I'm not used to this. I worked in a factory for 15 years where I worked 8 / 12 hour days, 48 hours a week. So this sitting around thing is just killing me. I feel lazy. We now manage 4 apartment buildings and my spouse has been doing a lot without my help. I feel so guilty.
Thank You to all for your concerns / comments, much appreciated!
I sooooooo feel your pain. It was a 6 yr. journey for me before I finally got a diagnosis, and I had many similar moments of anxiety and uncertainty, not sure what was wrong, and not even sure which doctor was the right one to go to.
We're all pulling for you to feel better and get some answers soon!
Tamara