Hello All,
It has been awhile since I have posted. I didn't want to bother you all during the holidays and then I let the time get away from me. For any one who might be interested here's my update. I had my 2nd neuro appointment in mid Dec. when they did the nerve conduction study and the EMG. They did a rather thorough NC on my left arm and right leg. Said it looked fine. So based on that and the blood work.....no MG. Then she did the EMG on my right arm and leg. She started at my ankle and worked her way up my leg including the hip area. Then she did some places on the arm including the palm near my thumb. She didn't do any on my face or tongue. She said the EMG looked normal! It was SO good to hear that! I had tears streaming down my face. The neuro suggested I see a Psychiatrist who could prescribe meds for depression/anxiety which I'm sure comes as no surprise to you all (or to me). Although a bit embarrassing, I am more than willing to go and see if it helps any. I had an appointment the next day with my GP. He thought the Psychiatrist was a good idea. I told him I was willing to go but was a bit skeptical because I felt the symptoms came before the anxiety and depression. They were caused by not knowing what was going on in my body. My GP knew it might be awhile before I could get in to a Pych because of the holidays so he prescribed Lexapro for me to get started on. I started with a low dosage and am now up to the level he thinks I should be on. When I first started taking it I felt it was helping the emotions (not the other symptoms, of course) but I am having some trouble controlling my emotions again. I have also been taking a very low dosage of lorezepam for a while. My appointment with the Psych is in mid Feb. My GP says if this doesn't help the next step is a Rheumatologist. My neuro told me she wanted to see me again in 2 months (which will be this month). I find that kind of curious since she doesn't believe this is neuromuscular. Guess she's looking for changes.
So this is where I am now......I am happy about the EMG news and altho it may not sound like it, I am trying to stay positive. But like all of you who have been in limbo land know, you come home to the realization that you still don't know what is causing the strange things happening in your body. It has been over a year since I had the eye symptom that sent me to the neurologist in the first place. I don't even know if that is connected to everything else going on, but I have been dealing with this for awhile. So doubts arise. The dent in my upper right hip concerns me. The neuro never said yes this is wasting/atrophy or no it isn't. When she did the EMG she said "it" is more pronounced on the right than on the left. But she didn't say what "it" was. I can see startings of something similar on the left hip. There is some pain with it. If this was really atrophy would it show up on an EMG?
I still have all the symptoms I originally mentioned and some new ones. Besides the twitches/fasc I now also have jerks (myoclonus?). They sometimes wake me up or they happen as I am waking in the morning. It could be a foot, a leg, an arm , a shoulder, my head. I have also become more shaky. When I reach for things and pick them up I am shaking...can be jug of milk, medicine bottle, fork when I'm eating. Hold out my finger to apply make up and it's shaking. I have the coordination to do these things but am shaking when I do. Does this symptom come before the "fail"? My legs shake when I stand on my tiptoes to reach something and they have started shaking pretty badly when I'm sitting on the commode...clonus? I have the runny nose when I eat and do simple house hold chores (knew this was a symptom of Parkinsons, didn't know ALS, too), watery eyes, drooling at night. Basically everything leaks....eyes, nose, mouth and ....bladder lol. Sorry for questioning so much, but wondering if these new things will raise concern with the neuro.
Sorry this is so long. Aren't you glad I don't post very often Thanks to all of you who have taken the time to read this. I just hope that if and when I get a diagnosis of whatever it may be that I will cope with it as well as all of you do and am able to be a source of strength and encouragement to others as you are.
It has been awhile since I have posted. I didn't want to bother you all during the holidays and then I let the time get away from me. For any one who might be interested here's my update. I had my 2nd neuro appointment in mid Dec. when they did the nerve conduction study and the EMG. They did a rather thorough NC on my left arm and right leg. Said it looked fine. So based on that and the blood work.....no MG. Then she did the EMG on my right arm and leg. She started at my ankle and worked her way up my leg including the hip area. Then she did some places on the arm including the palm near my thumb. She didn't do any on my face or tongue. She said the EMG looked normal! It was SO good to hear that! I had tears streaming down my face. The neuro suggested I see a Psychiatrist who could prescribe meds for depression/anxiety which I'm sure comes as no surprise to you all (or to me). Although a bit embarrassing, I am more than willing to go and see if it helps any. I had an appointment the next day with my GP. He thought the Psychiatrist was a good idea. I told him I was willing to go but was a bit skeptical because I felt the symptoms came before the anxiety and depression. They were caused by not knowing what was going on in my body. My GP knew it might be awhile before I could get in to a Pych because of the holidays so he prescribed Lexapro for me to get started on. I started with a low dosage and am now up to the level he thinks I should be on. When I first started taking it I felt it was helping the emotions (not the other symptoms, of course) but I am having some trouble controlling my emotions again. I have also been taking a very low dosage of lorezepam for a while. My appointment with the Psych is in mid Feb. My GP says if this doesn't help the next step is a Rheumatologist. My neuro told me she wanted to see me again in 2 months (which will be this month). I find that kind of curious since she doesn't believe this is neuromuscular. Guess she's looking for changes.
So this is where I am now......I am happy about the EMG news and altho it may not sound like it, I am trying to stay positive. But like all of you who have been in limbo land know, you come home to the realization that you still don't know what is causing the strange things happening in your body. It has been over a year since I had the eye symptom that sent me to the neurologist in the first place. I don't even know if that is connected to everything else going on, but I have been dealing with this for awhile. So doubts arise. The dent in my upper right hip concerns me. The neuro never said yes this is wasting/atrophy or no it isn't. When she did the EMG she said "it" is more pronounced on the right than on the left. But she didn't say what "it" was. I can see startings of something similar on the left hip. There is some pain with it. If this was really atrophy would it show up on an EMG?
I still have all the symptoms I originally mentioned and some new ones. Besides the twitches/fasc I now also have jerks (myoclonus?). They sometimes wake me up or they happen as I am waking in the morning. It could be a foot, a leg, an arm , a shoulder, my head. I have also become more shaky. When I reach for things and pick them up I am shaking...can be jug of milk, medicine bottle, fork when I'm eating. Hold out my finger to apply make up and it's shaking. I have the coordination to do these things but am shaking when I do. Does this symptom come before the "fail"? My legs shake when I stand on my tiptoes to reach something and they have started shaking pretty badly when I'm sitting on the commode...clonus? I have the runny nose when I eat and do simple house hold chores (knew this was a symptom of Parkinsons, didn't know ALS, too), watery eyes, drooling at night. Basically everything leaks....eyes, nose, mouth and ....bladder lol. Sorry for questioning so much, but wondering if these new things will raise concern with the neuro.
Sorry this is so long. Aren't you glad I don't post very often Thanks to all of you who have taken the time to read this. I just hope that if and when I get a diagnosis of whatever it may be that I will cope with it as well as all of you do and am able to be a source of strength and encouragement to others as you are.