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...
Hey Guys,
I am new here, but I have been struggling with a host of issues since November. It started out that I was losing all muscle strength in my hands, this progressed to my arms and legs and eventually swallowing. I have been passed around from a Rheumatologist to a Neurologist, then to a Neuromuscular disease specialist. They suspect I have myasthenia gravis but we have no diagnostic evidence of it. I have been sent for the antibody tests and they have been negative so far. I was sent for an MRI to see if there could be a central cause of the muscle weakness, where they found a lesion in my pituitary. They have tested all my hormones and they believe the lesion is just a Rathke Cyst and is fine where it is.
My neurologist has also sent me to a neuro-ophthalmologist and to an internist. The neuro-ophthalmologist has noticed a cogan eye twitch in my most droopy eyelid. The internist however says I meet the criteria for Chronic Fatigue Syndrome. I have found mestinon to be a huge help, however I have interstitial cystitis and it really bothers my bladder. I got to a point where I was unable to swallow solid food and my breathing was getting difficult. So at that point I was given a round of prednisone and it helped immensely. However all of my symptoms started to return again when I dropped from 20mg to 15mg.
My neurologist is now at a loss. She says I have a host of symptoms and I dont really fit into either the MG box or the CFS box. So she is hesitant to give me a label if it might be the wrong one. She is also hesitant to put me on steroid staving agents or anything as it is a long term commitment with a host of bad side effects. The breathing problems have now started to come back, I wound up going to the ER on Saturday. The doctor there seemed to think it was just anxiety; only after being there for 5 hours with no change did he start to believe me. He then just offered to put me back on prednisone, but I am hesitant to do that without discussing with my neurologist. It seems my neuro is just waiting for me to get bad enough I can be diagnosed with something. She wants me to see a pulmonologist but I cant get in there until Aug. 5. I am also awaiting the results of a repeat MUSK antibody test (I am sensing it was negative though as it was over a week ago and have not heard)
Here are all of my current symptoms:
- Muscle Weakness
- Muscle Fatigue
- Eyelid Droop w/ Cogan eyelid twitch
- Hands are shaky
- Fingers feel swollen, as if in hot weather, and feel difficult to move (this goes away with the Mestinon)
- Numb fingertips (Also with pain, feels like rug burn)
- Can't swallow properly, choking on food
- Constipation (must take PEG everyday)
- Muscle ache with the slightest exercise
- Thinning hair on head, extra hair on face
- Vertigo
- Sensitivity to sound, particularly in the mornings
- Sore wrists
- Patellar Femoral Sydrome (Knee Pain and clicking) (This went away while on prednisone, my only explanation is that while on it my muscles were stronger allowing my knee cap to track properly, when I go off, it slowly weakens and comes back)
- Lower back pain
- Brain fog/terrible memory
- Constant headache (pressure and paid behind my nose and eyes and then squishing feeling behind my ears)
- Chest feels heavy at rest, and very out of breathe with slightest activity
Have any of you guys been through this same thing? I am soo frustrated. It has also started to tear apart my relationship. My boyfriend is getting worn out and feels more like a caregiver than a boyfriend. So I have been trying to do it all on my own, but I gotta admit, just getting through the day is tough. I pretty much go to work, and if I can get home and manage to get food in me before I go to sleep, I consider it a success.
I am new here, but I have been struggling with a host of issues since November. It started out that I was losing all muscle strength in my hands, this progressed to my arms and legs and eventually swallowing. I have been passed around from a Rheumatologist to a Neurologist, then to a Neuromuscular disease specialist. They suspect I have myasthenia gravis but we have no diagnostic evidence of it. I have been sent for the antibody tests and they have been negative so far. I was sent for an MRI to see if there could be a central cause of the muscle weakness, where they found a lesion in my pituitary. They have tested all my hormones and they believe the lesion is just a Rathke Cyst and is fine where it is.
My neurologist has also sent me to a neuro-ophthalmologist and to an internist. The neuro-ophthalmologist has noticed a cogan eye twitch in my most droopy eyelid. The internist however says I meet the criteria for Chronic Fatigue Syndrome. I have found mestinon to be a huge help, however I have interstitial cystitis and it really bothers my bladder. I got to a point where I was unable to swallow solid food and my breathing was getting difficult. So at that point I was given a round of prednisone and it helped immensely. However all of my symptoms started to return again when I dropped from 20mg to 15mg.
My neurologist is now at a loss. She says I have a host of symptoms and I dont really fit into either the MG box or the CFS box. So she is hesitant to give me a label if it might be the wrong one. She is also hesitant to put me on steroid staving agents or anything as it is a long term commitment with a host of bad side effects. The breathing problems have now started to come back, I wound up going to the ER on Saturday. The doctor there seemed to think it was just anxiety; only after being there for 5 hours with no change did he start to believe me. He then just offered to put me back on prednisone, but I am hesitant to do that without discussing with my neurologist. It seems my neuro is just waiting for me to get bad enough I can be diagnosed with something. She wants me to see a pulmonologist but I cant get in there until Aug. 5. I am also awaiting the results of a repeat MUSK antibody test (I am sensing it was negative though as it was over a week ago and have not heard)
Here are all of my current symptoms:
- Muscle Weakness
- Muscle Fatigue
- Eyelid Droop w/ Cogan eyelid twitch
- Hands are shaky
- Fingers feel swollen, as if in hot weather, and feel difficult to move (this goes away with the Mestinon)
- Numb fingertips (Also with pain, feels like rug burn)
- Can't swallow properly, choking on food
- Constipation (must take PEG everyday)
- Muscle ache with the slightest exercise
- Thinning hair on head, extra hair on face
- Vertigo
- Sensitivity to sound, particularly in the mornings
- Sore wrists
- Patellar Femoral Sydrome (Knee Pain and clicking) (This went away while on prednisone, my only explanation is that while on it my muscles were stronger allowing my knee cap to track properly, when I go off, it slowly weakens and comes back)
- Lower back pain
- Brain fog/terrible memory
- Constant headache (pressure and paid behind my nose and eyes and then squishing feeling behind my ears)
- Chest feels heavy at rest, and very out of breathe with slightest activity
Have any of you guys been through this same thing? I am soo frustrated. It has also started to tear apart my relationship. My boyfriend is getting worn out and feels more like a caregiver than a boyfriend. So I have been trying to do it all on my own, but I gotta admit, just getting through the day is tough. I pretty much go to work, and if I can get home and manage to get food in me before I go to sleep, I consider it a success.
If that is the case take the 20 because that is helping.
I can't imagine any other treatment any better than that.
I was on 60 for a long time.
After we get better we slowly wean off.
A 5 drop is a lot.
Is that true you were better on 20 of prednisone?
I slowly went up with the prednisone, starting at 10mg and going up 5mg every 2 days. I started to notice a difference when I got to the 15mg, about 4 days in. I worked my way up to 30mg, for two weeks, then came back down to 25mg, where I stayed for 2 weeks. I then worked my way back down dropping 5mg every 2 weeks until I hit 10mg. I then dropped 1mg every two days.
My problem I guess is that my neuro is not convinced it is MG. My nerve studies have been negative or inconclusive and my antibodies are negative. It is also a bit difficult to show her in the office when it is freezing cold in there and is early in the day. I find my symptoms get alot worse in heat and by the end of the day. So she is hesitant to diagnose me and they are still questioning if it is just chronic fatigue. My neuro says that if she gave prednisone to anyone that it would make them feel better, and therefore that is not a good indicator of anything.
I went for a spirometer test yesterday, but I am guessing it will be normal. I mean I can take one deep breathe, the problem is the continued deep breathing. Like just walking up a set of stairs I am huffing and puffing like I had just done a marathon. I also just feel like it is tough to breathe, like requires alot of effort or I have a heavy chest.
I am just at a loss :( I just want to get a diagnosis so I can get help and move on with life. Instead I am trapped in limbo land. I mean my dentist won't do any work on me until I know what is going on. I need surgery for my bladder, but they won't do it until my neuro problems are sorted :(
If every patient who was having trouble breathing was put on prednisone I would think that would be a good solution.
I guess I am bias ....I spent 4 weeks on a respirator because I wasn't on prednisone soon enough.
If the goal is to get better....sure seems like s solution to me.
O well who am I ....just someone who spent months in intensive care.
I am also unsure if she really believes me alot of the time. I have begun to bring my boyfriend with me, so there is another person there saying, "Yes she really is as bad as she says"
What seems wierd to me is that prednisone helps you. Many conditions are treated with prednisone. Treatment is our ultimate goal.
Diagnosis is only to get to treatment and solution.
Sounds to me that you found treatment.
I got so so bad. I couldn't move. If that is what you want ...it is so hard to get to a functional state,. Years infact.
One neuro recommended low dose of prednisone in the beginning but I thought I could get better on my own. Headed down hill so so fast.
Respirator and actually found dead in my sleep one night.
Breathing and swallowing issues are so so so serious.
They will take care of you and you will go through lots of grief.
If I was you I would get back on. 20 of prednisone and find new neuro .
What you are doing isn't working..
After my crisis I was on 60. Not fun .
What is wrong with prednisone till you figure it out?
I can't imagine any treatment that could have less side effects than 20 of prednisone.
I know people who live on 20 for their auto immune issues.
Sleep?
I just hate to see you get worse. It is not fun at all.
Mestinon helps.
That is a real indication you have Mg.
When I had my crisis I walked into er and just felt my breathing.
The next day I couldn't life my bottom to roll over.
This can get so bad so fast.