awieleba
Very helpful member
- Joined
- Apr 28, 2008
- Messages
- 1,023
- Country
- US
- State
- michigan
- City
- oakland twp
I dont know where to start or how I feel about all this. BUt I am sure that many on here can relate.
Well, I went to the neuro and I am ashamed to say that when she walked into the room I bust out into tears from nervous anticipation of the results. (this did not help increase her opinion of my mental state). The result showed scattered atrophic fibers. She said this was good news that there was no denervetion/renervation or group atrophy etc. So, you think that I would feel happy, well I didnt. It still is so vague and if I am sooo fine then why would there be any atrophic anything in there? Then my hubby chimes in that I use to be so phycially active that could this be due to not working out anymore, she said yes. She kept telling me that this biopsy and the emg are ruling out als and that she cant tell me that I have it or that I wont get it 10 yrs from now either. I said what about 2 yrs f=rom know and she said that she doughted it. Thats great and all but I asked her about the atrophy and she was like 'whatever"! I have had one other neuro and rheumy tell me that they saw the atrophy on my hand, thats where I got the idea from. SHe said 'well, I feel a "little" stong muscle in there'. OK. What about my leg, same thing, dont know. What about my fasic's...she said well I get twiches and my father died of als, but I dont worry bout it....OK.
I asked her to do a exam to check everthing again, she did. She checked for jaw jerk and no i didnt have it, no clonus. Did babinski, I noticed that my toes seemed like they did not move either way. She said they did and it's fine. Reflexes still brisk and I asked her what they were on the scale and she said 16! She wont tell me, I asked her about spacity or something esle with my reflexes and she said that she is not going to give me any more info then I have or teach me medicine. Are getting the picture with her.....She told me 5x in the appt that I need to see a therapist about my fear and anxeity. I think that she does not like that I come in with so much information and questions and it comes off as anxiety. WELL, of course I am anxious! MY health is failing me and no one can give answers! I am not sure if I should go to U of MIch instead? I think that I should get a copy of my chart to see what exactly is going on since she tell me. I think that she does not want to concern me anymore than I am. A person on her goes to see her and I know that she is good and see's alot als/pls pts. I asked her if i could have pls, and she said no, that I dont 'look' like them.
I asked about MG, cipd, gbs,polymoyosis, you name it. She said that MG would show on the biopsy and even in the emg. SHe did say about 10% dont. All that other stuff would of shown in the emg or in the biopsy. SHe is a very intelligent lady. I asked well can we try Mg medicine just to see if there is a resonse, she said NO. WHat about Ivig...NO.
I went to the rheumy again on her advice prior to the vist. He did not feel that the symptoms I have are rheumatic in nature. He had tested me for all that early in the year. He said he would re-do the tests as one was a little elevated (ace) for sarciodoisis and my dad has this autoimmune. I did research it and sometime you can get this in the muscle. He would re check lupus, yadda, yadda,yadda. Well, he did the point test for fibro and i had only 10 out of 18 tender points and most folks with this have a lot more pain when presed on, so he did not think this.
WELL, back to neuro. So at this point my husband kinda gets irritated at ME! He says to the neuro that 'is there anything that will happen if she stops going to the docter for 6 months? are we gonna miss a diagnosed?' she said no, and then he pretty much said that is IT, you are not going to any docter for 6 months not even to the pulomary doc! I was suppose to have a repeat emg in sept. I guess that I will have to wait. He is sick of it, well so am I! He says you just need to start exercising! OK, wish I could. MY muscle's will shake. Because this doc says no als, my family thinks that I just need a little exercise, well I would if i could. I have pain in my feet and ankle and arms and my muscle will shake and twitch after so bad that I dont want to feel it!
LOng of it short (yea right) The neuro px me to phyical therapy and to a therapist. So I am going to go PT. I think that they have a better Idea of atrophy and weakness, maybe they can shed some light. I am going to see a therapist about my fears, it wont hurt to have better coping tools. I am just frustrated, if I dont als, then I wish they could say 'ok, here is what you have' well they cant do it so How do you move on with no diagnosed and your symptoms are getting worse? she says that she still thinks that this all due to my body recovering from when I was sick and blah, blah, sometimes MCT disease dont show up.....
I guess I should feel good?
WRIGHT: do you know anything about biopsy result of 'scattered atrophic fibers' only? I am gland that she says good, but good would mean it is clean of anything. I just feel that since there is this going on that it has to mean something. Maybe even pma?
sorry to ramble, I think a normal person would feel good about this but it is hard when your body is not getting better.
any input would be appreciated on this, I dont know what to feel.......
april
Well, I went to the neuro and I am ashamed to say that when she walked into the room I bust out into tears from nervous anticipation of the results. (this did not help increase her opinion of my mental state). The result showed scattered atrophic fibers. She said this was good news that there was no denervetion/renervation or group atrophy etc. So, you think that I would feel happy, well I didnt. It still is so vague and if I am sooo fine then why would there be any atrophic anything in there? Then my hubby chimes in that I use to be so phycially active that could this be due to not working out anymore, she said yes. She kept telling me that this biopsy and the emg are ruling out als and that she cant tell me that I have it or that I wont get it 10 yrs from now either. I said what about 2 yrs f=rom know and she said that she doughted it. Thats great and all but I asked her about the atrophy and she was like 'whatever"! I have had one other neuro and rheumy tell me that they saw the atrophy on my hand, thats where I got the idea from. SHe said 'well, I feel a "little" stong muscle in there'. OK. What about my leg, same thing, dont know. What about my fasic's...she said well I get twiches and my father died of als, but I dont worry bout it....OK.
I asked her to do a exam to check everthing again, she did. She checked for jaw jerk and no i didnt have it, no clonus. Did babinski, I noticed that my toes seemed like they did not move either way. She said they did and it's fine. Reflexes still brisk and I asked her what they were on the scale and she said 16! She wont tell me, I asked her about spacity or something esle with my reflexes and she said that she is not going to give me any more info then I have or teach me medicine. Are getting the picture with her.....She told me 5x in the appt that I need to see a therapist about my fear and anxeity. I think that she does not like that I come in with so much information and questions and it comes off as anxiety. WELL, of course I am anxious! MY health is failing me and no one can give answers! I am not sure if I should go to U of MIch instead? I think that I should get a copy of my chart to see what exactly is going on since she tell me. I think that she does not want to concern me anymore than I am. A person on her goes to see her and I know that she is good and see's alot als/pls pts. I asked her if i could have pls, and she said no, that I dont 'look' like them.
I asked about MG, cipd, gbs,polymoyosis, you name it. She said that MG would show on the biopsy and even in the emg. SHe did say about 10% dont. All that other stuff would of shown in the emg or in the biopsy. SHe is a very intelligent lady. I asked well can we try Mg medicine just to see if there is a resonse, she said NO. WHat about Ivig...NO.
I went to the rheumy again on her advice prior to the vist. He did not feel that the symptoms I have are rheumatic in nature. He had tested me for all that early in the year. He said he would re-do the tests as one was a little elevated (ace) for sarciodoisis and my dad has this autoimmune. I did research it and sometime you can get this in the muscle. He would re check lupus, yadda, yadda,yadda. Well, he did the point test for fibro and i had only 10 out of 18 tender points and most folks with this have a lot more pain when presed on, so he did not think this.
WELL, back to neuro. So at this point my husband kinda gets irritated at ME! He says to the neuro that 'is there anything that will happen if she stops going to the docter for 6 months? are we gonna miss a diagnosed?' she said no, and then he pretty much said that is IT, you are not going to any docter for 6 months not even to the pulomary doc! I was suppose to have a repeat emg in sept. I guess that I will have to wait. He is sick of it, well so am I! He says you just need to start exercising! OK, wish I could. MY muscle's will shake. Because this doc says no als, my family thinks that I just need a little exercise, well I would if i could. I have pain in my feet and ankle and arms and my muscle will shake and twitch after so bad that I dont want to feel it!
LOng of it short (yea right) The neuro px me to phyical therapy and to a therapist. So I am going to go PT. I think that they have a better Idea of atrophy and weakness, maybe they can shed some light. I am going to see a therapist about my fears, it wont hurt to have better coping tools. I am just frustrated, if I dont als, then I wish they could say 'ok, here is what you have' well they cant do it so How do you move on with no diagnosed and your symptoms are getting worse? she says that she still thinks that this all due to my body recovering from when I was sick and blah, blah, sometimes MCT disease dont show up.....
I guess I should feel good?
WRIGHT: do you know anything about biopsy result of 'scattered atrophic fibers' only? I am gland that she says good, but good would mean it is clean of anything. I just feel that since there is this going on that it has to mean something. Maybe even pma?
sorry to ramble, I think a normal person would feel good about this but it is hard when your body is not getting better.
any input would be appreciated on this, I dont know what to feel.......
april