Update and, of course, more questions

KITT · 02-03-2012, 02:56 PM

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.

Judith Ann · 02-03-2012, 03:22 PM

Are you seeing a different neuro for your 2nd opinion?

Judy

notme · 02-03-2012, 05:53 PM

It's very difficult to read large blocks of text.

ALS doesn't affect your eyes. It causes rapidly progressing weakness followed by atrophy. In UMN only issues, the neuro would have noted spasms, spasticity, positive Babinski among other assorted signs.

It would be unusual for any atrophy to begin in your hips. It usually starts dismally, meaning an arm or a leg...hand or foot.

Don't know who told you it caused a runny nose and bladder issues. You may well have something going on, but it's not ALS.

Good luck

KITT · 02-03-2012, 06:09 PM

Judy,

This is the second neuro I have seen. I went to the first one because of a problem with my eye that suggested MG or MS. He tested me for both. Tests normal. I was beginning to experience other symptoms during this time but he did not pursue them. So I obtained a referral for a second opinion. That is the neuro I am seeing now at a teaching hospital nearby. The first appointment she did clinical exam. The next one the NC and EMG (I mentioned in this post. I have a follow up appointment with her this month.

Alyoop · 02-03-2012, 06:17 PM

Kitt, if you have an appointment next month, then write your worries down so you don't forget, and ask the neuro. He will be able to explain what he meant. Ask him if your examination was normal. If it was then you can stop worrying that you might have clonus etc, as it would show up on examination. For your peace of mind, get ALL the questions you have posted here answered. It will make you feel much better.
Jerks while going off to sleep and during periods of sleep are extremely common. They are not myoclonus. When a person is anxious they get much worse. I had them when I was very anxious a couple of years ago. They settled when I got a grip on my emotions, helped by a psychologist.

KITT · 02-03-2012, 07:34 PM

Notme,

I'm sorry my posts are so hard to read. At the very least I should do more spacing. I don't intend for them to be so long. I will try to do better next time.

There was actually a post and discussion on here from a caregiver mentioning the problem her pals had with a runny nose when they ate. I had actually had this problem before I saw that post....just thought it was interesting that it was being discussed on here because I didn't know there was a connection.

Thank you for your reply and information.

KITT · 02-03-2012, 07:44 PM

Alyoop,

Thank you for your suggestion. I will write down my questions and try to get them answered. The neuro didn't note any clonus in the exam at the end of Nov. I wasn't having these types of problems then....so thought maybe it wouldn't show up in exam until now. But I will ask at my next appointment.

I am hopeful the psychiatrist can help me get my mind wrapped around all of this.

Thanks again for your reply,