neuro appt. tomorrow

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neuro appt. tomorrow

Postby Renae on August 18th, 2003, 2:33 pm

Hi all-

I have follow-up appointments with both the rheumatologist and neurologist tomorrow. I'm feeling a little overwhelmed because I feel like everytime I go, I never ask the right questions or say the right things and leave there feeling no better if not worse! I've seen the neuro 4 or 5 times and he's basically keeping an eye on me. I've had an MRI and EMG that were both clean and I've had lots of blood work, etc. But, he's never diagnosed me with BFS and when I've asked him about it I feel like he starts talking above me and I leave more confused. I feel like I've learned so much from this website and then go in there and feel like I know nothing. I guess I'm just looking for some advice as to what questions to ask that will help to make me feel more reassured. Maybe nobody here can really tell me that, but I'm just kind of putting it out there. My symptoms are so weird because it seems like its always something different. I had a really bad episode of Vertigo last July and very shortly after that I started twitching pretty badly. Since then (over a year now) my twitching is far less, but I've had other symptoms come and go over this period of time including numbness, tingling, a lot of muscle aches and pains which are now concentrated in my left leg and just general feeling of fatigue. I do have some days where I feel better, but I feel as if I always have something ailing me. The rheumatologist has diagnosed me with fibromyalgia, but I feel like he didn't really know what else to tell me. So, I guess I'm just not convinced of anything and nobody has ever said, "you have bfs"....so, its a little scary. Any thoughts or suggestions would be much appreciated since at this point I don't even know what to ask anymore. I'm only 28 and just feel like I shoudln't feel this "bad" all the time. And, it should be known that anxiety has definitely played a huge part in all of this. I've obsessed about it to a fault. I've had to stay off any other sites because I drive myself into a tizzy of thinking I have every awful disease out there. I've been taking Klonopin which seems to help and it also helps the twitching. So, anyway....sorry to blab. I just wondered if anybody had any suggestions. It seems like so many of you come back from the neurologist feeling so reassured and I'm guessing you all ask a lot of questions.

Thanks,
Renae :)
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Postby dwl on August 18th, 2003, 4:21 pm

Hi Renae,

Good luck for tomorrow. I strongly suspect that many neuros have not heard of bfs - why not ask if he has? Ask why he is keeping you under review - most other people on the forum have been seen & discharged from follow up. Ask him what his working diagnosis is. Is he a neuromuscular specialist or a general neuro? You might want to consider seeing a neuromuscular specialist who would be able to answer all of your questions. Finally, if he talks above you don't let him get away with it! Say that you don't understand - it's HIS job to present things in an understandable way, not yours. Consider taking a friend or relation along with you for moral support.

Hope this helps,

David
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Postby reneeintx on August 18th, 2003, 6:06 pm

Hi Renae :)

I really can't offer much, since I agree with everything David said. You know what!! I actually printed posts from this forum and took them with me and had my neuromuscular specialist explain them to me. I was new to this then..but now I'm a pro so he better be ready.

I have an appt. in October so maybe I should be getting my questions ready now. Especially the one that always seems to be a big controversy here...How often do you see a patient(if any) that has a clean emg that goes on to develop ALS??? I think is a biggie!! This one always has be in a tizzy :shock:

After I had my emg(performed by him), he said, "fire away, go on ask me anything". So I'm hoping he will do the same this time..no emg though. I don't think he'll do another.

I just want to wish you luck and like David said, it'd be a good idea if you can take someone with you. I wish I could 've had someone with me, but my husband was out of the country and I'm all alone here :(

You make him stay there and answer your ??'s in laymen's terms.

Have a great appointment!!
Come back and tell us all about it!!

Renee
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thank you

Postby Renae on August 19th, 2003, 11:06 am

Thanks to David and Renee for your suggestions and support! Asking him what his working diagnosis is and why he is keeping me under review are both very good ideas. I will ask him both! Thanks so much. And, Renee, yes you probably should start thinking of questions now. I've been thinking about it off and on, but never sat down and wrote things down or anything. That's great that you printed things off this website and showed them to your doctor. Maybe I should do the same.

Thanks again for taking the time to reply!

I'll let you know how it goes!

Renae :)
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thank you

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