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Neuromuscular Diseases Message Board

Neuromuscular Diseases Board Index

Potential MG or ?
Feb 23, 2015
Hello, my name is Greg and I am posting this in a effort to get ideas on a direction to go with finding a answer to my health problems. I will give a short overview of what I am dealing with and then my test results. Any opinions will be greatly appreciated.

I am a 30 year old male, I have a twin sister who also has health issues (nothing like mine however). When I was around 23 years old I started to weight train and I found that I was very good at weight lifting and strong. I spent about 2 years training and even competed in some local strong man contests. I never did any steroids, or illegal drugs. I did overuse caffeine and really did abuse my body (I would be severely sore for a couple days after working out). After about 2 years of working out I developed a odd problem, I would go to the gym to work out, and I really couldn't lift much weight. Imagine being able to pick 300 pounds off the ground 20 times in a deadlift 6 days ago, only to struggle lifting 240 pounds a couple times today. I wasn't out of breath, it was like I wasn't using all my muscle fiber. At that point I figured I just had been going at things to hard, so I backed off my training over a period of months. By about 8 months after my initial odd day where I couldn't seem to lift much weight, I was having that problem much more often. It became most days I tried to workout. At that point I quit lifting weights and tried to rest more.

I started to notice that other things were starting to become more difficult. I struggled playing the guitar because I couldn't keep a rhythm. It was like my wrist would fatigue and I couldn't get it to fire fast enough to keep up. If I was exposed to a situation that was stressful and required physical action my body would almost send signals that something was wrong and not to do it. If I tried to push through how I felt sometimes I could, other times I would just get weak and have to sit down.

That was 5 years ago, fast forward to today. Every day is a different day for me. Things are worse now then 5 years ago. Some days I struggle to pedal a bike at work (I have to cover a large scale industrial plant on bike) and going up slight inclines I slow way down. Walking up stairs can be a struggle some days. I still have strength, but my muscle fatigues very fast. A honest example would be that I can still pickup 135 pound straight bar and overhead press it once. However ask me to hold a 2 lb weight out to my side and I will get very weak can't resist my arm falling to my side in a short time. Another example is that I can squeeze with a excess of 260 lbs on a hand grip tester at a doctors office which is crazy, however ask me to hold it hard for a while and I will lose my strength. If I do a lot of physical work in a day I never am sore anymore, I just seem to get weak. The other day I was lifting some small 3x4 foot pieces of drywall (about 10 pounds tops) overhead and could barely lift them after about a minute of working with them. Another example was I was cutting some heavier cast iron pipe with a friend, and I had to hold onto it to help him walk down a ladder. I started shaking while holding onto it for about 2 minutes and almost couldn't hold on.

I have been to many doctors. I went to a rheumatologist and after a extensive test battery nothing was found that was abnormal. Normal thyroid, blood levels, etc. I was put on a 6 day test of prednisolone (high dose to low dose) and seemed to have a increase of strength on day 5. Day 6 was better than my average day as well. By day 7 I felt worse than normal and by day 9 (off meds for 3 days) I felt pretty normal. I was referred to a neurologist at that point and the neurologist did a EMG on me. He said I had "Neuropathy" and that and "I probably would never know why, and if I wanted a second opinion I should get one". I went to my normal GP doctor told him what the neurologist said, and he wasn't happy. So I went to another neurologist and had a MRI of my brain done, nothing was found. He also did a EMG test which showed no indication of anything abnormal or neuopathy. My blood work showed a slight deficiency of vitamin D, and I tested positive for lyme disease on the inital test and negative on the western blot (this has happened 2 times since). At this point I lost my insurance so for 2 years I couldn't see any more doctors.

Recently I have picked up the pieces and I am trying to get my life back together since I have realized I am not getting better. I went to a psychologist to rule out mental health being a issue (therapist says I seem to think properly and that its highly unlikely to be be related to mental health). I am seeing a new neurologist who seems to care about my health. He has checked my blood work, completed a exam, and did a emg. He says my EMG was perfectly normal, however my muscle fatigue is abnormal. I also have double vision when I look to the left, my left eye struggles to look up and to the left as well. I have nystagmus present in both eyes when I sustain a gaze for a while. My blood work showed no key markers for MG however He has suggested I still could have myasthenia gravis. I also tested positive for lyme again on the initial test and negative on the second western blot. He said that was unusual but could be triggered by antibodies roaming in my blood. At this point I am waiting a single fiber EMG that will be done in 3 weeks, and if it comes back negative I will be having a sleep study done along with possibly a spinal tap.

After reading about MG which I knew nothing of until recently, I realize it certainly would fit my symptoms. I didn't notice much in my face however I do have times where I get double vision while looking at things, that takes effort to realign my eyes (like my eye muscle fatigued). I have never had any pain associated with my problems, only weakness. If I lay on my back and have pressure put on my stomach/diaphram many days I feel weak like I cant breathe. Same case be said during physical work I often feel l like my body only wants to do one thing, operate my lungs or my muscle say on my arms. I don't get out of breath at all its like my lungs have the same weakness as the rest of my body.

[B][U]Again here is a concise list of my symptoms:[/U][/B]

Rapid muscle fatigue after use.

sometimes I shake after a short time with a load on a muscle

Nystagmus at maximum deviation

I have a hard time looking up and to the left, and double vision when looking to the left (this gets freakily better when I place ice on my eye, which I read online can help if its a nerve transmission issue).

Somedays my diaphragm feels very weak.

A hot shower seems to make my symptoms worse.

Can't play the guitar for long because its hard to keep strings fretted and keep a steady rhythm without slowing down.

Sleepy during the day despite getting plenty of rest (I don't snore but I am having a sleep study done to check for sleeping issues)

[U][B]concise list of tests [/B][/U]
All conventional blood work has come back negative (within range) I had markers of inflammation once on a test along however the next time it was within range. I test positive for lyme diesease on the elisa test (Believe its that) and negative on the western blot. The only time I ever had a tick on me was when I was 5 and it wasn't on long enough to bite me. I have never seen a rash and the doctors don't believe I have Lyme disease after further testing.

[B][U]Other known health issues: [/U][/B] I have GERD and I am not taking my meds due to my stomach being upset on omeprazole. I am going back to a GNT to find a new plan to combat my nausea and acid reflux problems. My fraternal twin sister has weird blood related health issues (low white blood cells) and hasn't been properly diagnosed due to her lack of health care.

[B][U]Medications I am on[/U][/B]
I am not on any meds at all, and haven't been for most of my life. I take Tylenol or ibprophen a couple times a year if that. I virtually don't drink alcohol at all, no recreational drugs either.

[B][U]Other possibly helpful information: [/U][/B]
About a year before I had noticeable problems I was oddly sick from thanksgiving until after jan first. I felt muscle aches slightly and I was very weak. I had antibiotics and nothing seemed to help, I just slowly got better. I do notice that I get sick fairly often (I am actually sick right now, my lungs hurt and I have a sore throat).

With all that said I want to say thank you for reading what I have said and any ideas/advice would be great. I have done a ton of research into possibilities and about different diseases, but MG is a hard one to grasp since everyone has different symptoms/manifestations. Most of What I have read about MG doesn't often have actual stories about people who have it, which makes it hard to relate my symptoms. Such as " muscles that fatigue fast" could mean a lot of different things. Anyway, thanks again and I will gladly add more details or answer questions if more details are needed. -Greg

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