awieleba
Very helpful member
- Joined
- Apr 28, 2008
- Messages
- 1,023
- Country
- US
- State
- michigan
- City
- oakland twp
Hi Guys!
Well, most of you know my loooong story so I wont bore any with details.
I am seeking your wonderful advice about my next step in this process. I have made an appt with the cleavland clinic (about 4hrs away) for Feb.4th. I am due to have a repeat emg with my current als nuero 'sometime' in the spring she said. My first emgs were within one month apart (may 08) and at the very start of this (or at least for what I know).
I think that I would like to vist this new clinic and have a new set of eye's on this. I checked and this is a VERY reputable als clinic in my area. I would like my next emg done here and I have requested a single fiber one. When I saw this current doc, by all standards I was very anxious! I just had a baby and was very sick with some infections and scared. I feel like she cant get that nervous lady out of her mind. I have since went on lexapro and have a grip on my anxiety. Yet, all the sx have gotten worse. I have given it time like she told me to.
I guess my question is this, should I stay with the als doc that has seen me since the start? SHe would know any changes etc. And she is at a university clinic and does research. Her father passed from this diagnosed. (vested interest) BUT, when I saw her in fall and she saw my hand atrophy (and noted it was there) she just blew it off as mixed connective tissue loss or 'pinched nerve' (oh Zaphoon, I wish and I swear she said that! but she saw all my clean mri's). She does not explain anything to me and wont even tell me what my reflexes are, just that they are brisk. I had my chart sent from emg day and it was wrote down as 2 of 4. Ithought it was out of 5, so I wonder if that means 3 of 5? When I asked her she told me my relfexes were 16! Oh, so funny..when I ask questions she says that she wont 'teach' me anything more than what I already know!
I think that a new nuero may help me or explain things or try things. I just dont want to waste my time by going and getting the same story. My husband has to take off work and we have to get sitter for kids, blah blah blah.
I was gonna do nothing at all anymore but my hands have got worse and I feel that I need to try one last time. I thought that I would go to the cleavland clinic and see what goes and then be done with it. I would go to rhuemy and infectious diagnosed doc and get one last auto immune panel and test for lymes and then be done with that...
I feel that my hands are so bad (relative to what Is normal for me) and I have more muscle loss in thighs. Kinda all over bulk loss. I wont go into list of all other progressing sx!If the emg is clean then it will give me some piece of my mind. I do have scattered lesions in the white matter of my brain that have been told were nothing....wonder about that, ms ruled out.
So, in a nutshell.....do you think that it is a waste of time to go to cleavland and I should stay with my current als doc at a teaching university hosp?
I appreciate any adivice or opinion on this.....this would be 2nd als nuero but I did see a local neuro. I 'think' that if I go here and it is the same as the other place then I can put this to rest and understand that I may the 'cindym' diagnosed (JK) or at least know that I do have something but so far it is not als.?
Gratefully,
April
Well, most of you know my loooong story so I wont bore any with details.
I am seeking your wonderful advice about my next step in this process. I have made an appt with the cleavland clinic (about 4hrs away) for Feb.4th. I am due to have a repeat emg with my current als nuero 'sometime' in the spring she said. My first emgs were within one month apart (may 08) and at the very start of this (or at least for what I know).
I think that I would like to vist this new clinic and have a new set of eye's on this. I checked and this is a VERY reputable als clinic in my area. I would like my next emg done here and I have requested a single fiber one. When I saw this current doc, by all standards I was very anxious! I just had a baby and was very sick with some infections and scared. I feel like she cant get that nervous lady out of her mind. I have since went on lexapro and have a grip on my anxiety. Yet, all the sx have gotten worse. I have given it time like she told me to.
I guess my question is this, should I stay with the als doc that has seen me since the start? SHe would know any changes etc. And she is at a university clinic and does research. Her father passed from this diagnosed. (vested interest) BUT, when I saw her in fall and she saw my hand atrophy (and noted it was there) she just blew it off as mixed connective tissue loss or 'pinched nerve' (oh Zaphoon, I wish and I swear she said that! but she saw all my clean mri's). She does not explain anything to me and wont even tell me what my reflexes are, just that they are brisk. I had my chart sent from emg day and it was wrote down as 2 of 4. Ithought it was out of 5, so I wonder if that means 3 of 5? When I asked her she told me my relfexes were 16! Oh, so funny..when I ask questions she says that she wont 'teach' me anything more than what I already know!
I think that a new nuero may help me or explain things or try things. I just dont want to waste my time by going and getting the same story. My husband has to take off work and we have to get sitter for kids, blah blah blah.
I was gonna do nothing at all anymore but my hands have got worse and I feel that I need to try one last time. I thought that I would go to the cleavland clinic and see what goes and then be done with it. I would go to rhuemy and infectious diagnosed doc and get one last auto immune panel and test for lymes and then be done with that...
I feel that my hands are so bad (relative to what Is normal for me) and I have more muscle loss in thighs. Kinda all over bulk loss. I wont go into list of all other progressing sx!If the emg is clean then it will give me some piece of my mind. I do have scattered lesions in the white matter of my brain that have been told were nothing....wonder about that, ms ruled out.
So, in a nutshell.....do you think that it is a waste of time to go to cleavland and I should stay with my current als doc at a teaching university hosp?
I appreciate any adivice or opinion on this.....this would be 2nd als nuero but I did see a local neuro. I 'think' that if I go here and it is the same as the other place then I can put this to rest and understand that I may the 'cindym' diagnosed (JK) or at least know that I do have something but so far it is not als.?
Gratefully,
April